Stories from the present, lessons for the future

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1 Stories from the present, lessons for the future

2 Foreword by Katherine Murphy This is now the fourth year that we have published our annual collection of some of the worst stories that we have heard over our Helpline. When we first published the report we did so because we thought that nobody was talking about an issue that was coming up frequently over our Helpline care of the elderly in Hospital. Since then progress has been made and there is now much more awareness of the need to focus on this area, both within the NHS and the wider healthcare community, but there is still a lot to be done. Along with this renewed focus has come a shift towards involving the patient more in their care, and respecting their right to dignity. The NHS constitution promises to do just that, but that promise has yet to be met by action. In our recent survey 70% of patients were unaware of its existence, and more worryingly, over half of GP s said that they were not knowledgeable of its contents. The stories in this report remain very much the same as those included in our 2009 report. The issues surrounding communication, toileting, accessing effective pain relief and nutrition remain. But we have come to believe that what s needed isn t huge structural change or renewed policies. Instead two things need to change. The first is the pockets of bad practice that exist, and which allow a culture of poor care to thrive. The second is that everyone in the Healthcare community should be working hard to ensure that those with power to tackle poor care are doing so. To assist with changing the culture in those pockets of bad practice we launched earlier this year a best practice review in which we brought together the thoughts of Directors of Nursing around the Country, to compile a list of the action some are taken to improve care for the elderly. To play our part in the second we have joined with the CQC to share our data on poor care. We believe that by working with CQC in this way, we have together made sure that people s voices were heard. We were able to demonstrate to callers to our Helpline that where appropriate, the regulator acted on their concerns. Poor care may never be eradicated. But as this report shows, far too many people are let down by the NHS, and everyone that works within it, or comments on it, should join together to ensure that reports like this become a thing of the past. 3

3 Table of Contents Introduction...1 Positive Comments Adelaide Joyce Kane Edward Lamb Patient B George Alfred Robertshaw Patient A Mr Ronald Bowman Marjorie White Stephanie Walford Yvonne Parker Mrs Maisie Walton Margaret Shirley Allen Lauren Hughes Dr Katherine Rounce...45 Responses from providers...47 About the Patients Association...53

4 Introduction The Patients Association is very proud of the fact that we publish Patient Stories, but every year it has a somewhat bittersweet taste to it, as some people have had such terrible first hand experiences. Of course it is important that we publicise these accounts, to make sure that patients accounts of their health and social care treatment is always at the forefront key decision makers as they strive for improvements. Many of the people who are in this report are sadly no longer with us and those that are, often have had traumatic experiences that they will never forget. This can never be undone and they deserve to have their story told and heard by those who can do something to make sure this never happens again. It is easy to read these accounts and dismiss them as 13 isolated instances, of poor care, but this is the fourth consecutive year that we have published Patient Stories. Our Helpline is receiving a record numbers of calls and we have ambassadors working around the country that have been confronted with concerns that also run parallel to those appearing in this report. They are far from isolated instances. In our first report, Patients not numbers, People not statistics Claire Rayner, our late and much missed former President, said that For far too long now, the Patients Association has been receiving calls on our Helpline from people wanting to talk about the dreadful, neglectful, demeaning, painful and sometimes downright cruel treatment their elderly relatives had experienced. Unfortunately this type of experience is still occurring and there is public concern that the culture and behaviour that is leading to these problems may is become institutionally engrained in NHS Services. This type of problem will not be solved over night and we do not pretend that there are easy answers. Indeed neither are we on a witch hunt looking to secure blame on anyone or any professional group. The outcome we are ultimately looking for is for patients and carers to come away from their experiences in this country 100% satisfied. This should not be beyond us, and indeed we know that it is not. You will read in these accounts that some people have had positive experiences mixed in with their negative ones. There is no doubt that the majority of healthcare professionals, across the board, not only have the right intentions and motivations but also the skills and ability to perform their duties to an exceptionally high standard. These dedicated individuals deserve many accolades, and often they will never receive any. This report is not meant as a slur on them, their respective professions nor the healthcare industry as a whole. Just by examining these examples which are highlighted here it is clear to see that there is a problem, and it would be negligent for us to ignore the information that we have. As an organisation we are willing to work with people who use services and staff to ensure that solutions are found to secure the future of excellent patient care for many generations to come. Robert Francis QC, Chair of the Mid Staffordshire NHS Foundation Trust Inquiry, said in his letter to the Secretary of State when submitting the report in March 2010 If there is one lesson to be learnt, I suggest it is that people must always come before numbers. It is the individual experiences that lie behind statistics and benchmarks and action plans that really matter. 7 1

5 This is really the message that we have repeatedly tried to convey in the succession of these reports. Unfortunately patients are too often forgotten when reforming the health service and yet that is always where the impact is most acutely felt. More needs to be done to ensure that patients are at the centre of decision making, along with professionals and other key groups, to ensure that any reforms benefit all. When we embarked upon last year s report we realised that we needed to take more positive action to resolve the problem rather than just talking about it and as a result we initiated the CARE Campaign. From the end of 2011 we were also working closely with the Care Quality Commission to find ways we could utilise the information we collect. As a result we launched the joint tell us about your care pilot, which advised the regulator of some of the cases we hear through our Helpline that we thought may have breached the CQC s Essential Standards of Quality and Safety. This helped to bring about positive changes in the healthcare system as the intelligence proved to be of clear value to the CQC and, where appropriate, the regulator took action. Between March and September 2012 the Patients Association and the Care Quality Commission (CQC) worked together to identify and act on poor care in a pilot project known as tell us about your care. Information from the public is valuable to CQC as it helps to inform when, where and what they inspect. During the project, the Patients Association passed on anonymous information they received from callers to their helpline about the care they had received that was relevant to CQC s regulatory work. The majority of the information we passed on was valuable to CQC and we were able to demonstrate to callers to our helpline that, where appropriate, the regulator acted on their concerns. Following the success of the project, we will continue to work with CQC to identify and act on poor care. The next phase of our work will focus on the experiences of elderly people. As this report shows there is a clear need to drive improvements to the care they receive and together we will play our part. Of course this report does not cover every issue that we hear on the Helpline, and we are confronted daily with many different, and sometimes bizarre, requests and questions. It does however, represent a large and significant proportion of what we hear. I would additionally like to thank those who have agreed to participate in this years Patient Stories. It is a brave decision to make people so publically aware of your experiences, especially considering the personal nature of this information. It is equally brave for those who have written the accounts and those that have written them on behalf of relatives. It is just as difficult for a loved one to watch someone in hospital when their care is not going well and I am pleased that some of these people have agreed to tell their story on behalf of their relatives. Simple gratitude will never seem sufficient. Positive Comments We are so grateful to the District Nurses who have been marvellous and to an Emergency Doctor who we had to call on to attend on Saturday as my mother was so poorly. He took a lot of time with her and spoke to her at length and was most concerned about the lack of provision that had been made for her. Sharon Kane Our thanks should go to the following people who tried their best: Kirklees Social Services who cared for him at home, and who showed both consideration and compassion; as and when needed, especially his team of carers and their manager. District nursing who also cared for him at home as and when necessary. The actual nursing staff at both Halifax and Huddersfield Hospitals at the hospital who were always both caring and helpful and also finally to his GP, who has always acted both professionally and considerately both towards him and also towards his family. Thank you, all of you. The family of George Robertshaw I am particularly grateful to the Charge Nurse who proved to be excellent, with consistently high standards. He showed compassion, knowledge and expertise and is an excellent example both to this colleagues and to student nurses. I also found that the care of one of the junior doctors on the urology team was first rate. Stephanie Walford On a positive note, I was looked after by a lovely theatre nurse, my surgeon was very good and I do not appear to have suffered any physical side effects from the operation. Yvonne Parker Although there was nothing that the Nurses and consultants in Stoke could do for Lauren, the care and attention that Lauren received there was outstanding. And the care and support they have shown us since has also been wonderful. We have the greatest admiration for all of the staff on the CICU ward. Mr and Mrs Hughes Cameron Miller Helpline Manager November

6 1. Adelaide Joyce Kane By her daughter, Sharon Kane Adelaide Joyce Kane was admitted to the James Cook University Hospital in May Her daughter explains that she was shocked to discover how quickly her mother had become confused. She was also disappointed by the conditions under which Mrs Kane was discharged. My mother, Adelaide Joyce Kane, is a very independent, feisty lady and she has all her mental faculties. She fell on the 28th May 2012 and sustained a broken hip and was admitted to Ward 37 of James Cook University Hospital, Middlesbrough, and was operated on the next day. As I live in France I immediately booked a flight back to the UK to see her, I was scheduled to land the following day. I couldn t have been more shocked when I arrived at the hospital to find her confused and distressed and looking very ill indeed. She was refusing food and drink and refusing to believe that she had an operation. She accused the staff of trying to poison her and she wanted me to take her home that day. This was clearly not an option because she was so ill. I was very upset, but I did manage to coax her to eat and drink a little and I actually went out and made some nourishing food for her myself and brought it into the hospital at the next visiting time. I spoke to the staff about her sight problems, because I felt that they may have contributed to her falling on the stairs, and I asked them to arrange for someone from the ophthalmologist department to see her whilst she was in hospital. I informed my cousin, who lives in Nottingham, that my mother was not well at all and that all reports that she was doing OK had been misleading. My cousin and her daughter travelled to Middlesbrough straight away to visit my mother. When we all visited her together on Sunday 3rd June she was tired and frail looking and slipping in and out of sleep. She had eaten some food that day but she looked very weak and fell asleep before visiting hours finished. We were all very concerned and we spent that evening discussing how to go about arranging for some care for her when she eventually came home. We had some ideas but there was little we could do because it was the Jubilee Bank Holiday and we couldn t contact anyone. We did not expect she would be discharged until perhaps a week or so at least and certainly not before Wednesday the 6th June when the Bank Holiday was over. We expected at the very least she would be discharged with a care plan agreed and arrangements for some form of after care in place, after an assessment of her home conditions by trained therapists. However, none of this was forthcoming. We got a telephone call at around midday on Bank Holiday Monday, 4th June, and we were told that my mother was being discharged. The call didn t even come to me it came to my daughter Lucy who lives in South Yorkshire. She had to call me and pass the message on. I was flabbergasted and called the hospital straight away to ask what the arrangements were. There were none, just come and fetch her and get on with it! It seemed that it did not matter in the slightest what her home conditions or care was going to be, as long as she had some mobility on her Zimmer frame she could be discharged without a backward glance. No one asked us what care we could or would provide. My mother informed the care team that she lives in a flat that has a lift and she has an en suite bathroom. This is, of course, a fact but no one thought of how we would get her into the flat, or, what physiotherapy she would need in the short, medium or long term. We acknowledge that my mother had a raised toilet seat but it had been in a shed for the last 9 years. Apparently, she was measured for some walking sticks but when we enquired we were told that as it was Bank Holiday no one was available to give them to us or tell us where they were. None of the discharge team were available (again due to the Bank Holiday) so we just had to take my mother home and wait for the GP surgery to get in touch regarding a District Nurse. When no District Nurse arrived I called the surgery myself, and it is fortunate that I did because it turned out that they had no records and knew nothing about my mother and the need for a District Nurse. They had to rally round and indeed a District Nurse did arrive at 5.30pm on Wednesday 6th June knowing very little indeed about the case. Some sketchy notes had been faxed to her. My mother also has poor visibility and we know she has cataracts. I, my daughter and my cousin asked the staff about getting a referral to the ophthalmologist department and for someone to come to see her whilst she was in the hospital to see if her poor sight may have contributed to her fall, and if anything could be done for her. Again, we acknowledge that last year she was seen as an outpatient at the department and they told her to wait a while and return to her optician for another referral to be made. However, it seemed a perfect opportunity whilst she was there. When we asked about it, there was a flat denial that we had said anything to anyone about it. We are not and never have been in the habit of lying about anything regarding this. We know we all mentioned it on more than one occasion and were reassured by the nurse caring for my mother that the doctor seeing her would be informed and he could then refer her to a colleague. I spoke on the telephone to a ward clerk and a nurse on Thursday the 31st May and they assured me it would be written down and noted. I spoke on Saturday 2nd June to a nurse and my daughter phoned on Friday June 1st and again asked for it to be noted and acted on. My cousin attended the hospital with me and was also there when I made the telephone call. The result is that my mother has to return at some point as an outpatient. At the moment she cannot return due to the recovery she needs to make. It is a very good thing that my mother has a caring family who are educated to PhD level to voice the complaints that need to be made. We dread to think what would have happened to her if she did not have this support. Also, fortunately, my mother is in possession of her mental faculties and can remember the exercises she had to complete when she broke her right hip 9 years ago, but perhaps they are not the right exercises and it seems ridiculous to have to rely on Google for this help rather than the NHS that she paid into all of her life. The District Nurse has requested a community physiotherapist to come and assess my mother and I have also phoned the hospital to speak to them to voice our concerns. I will also speak to her GP at length tomorrow. We are so grateful to the District Nurses who have been marvellous and to an Emergency Doctor who we had to call on to attend on Saturday as my mother was so poorly. He took a lot of time with her and spoke to her at length and was most concerned about the lack of provision that had been made for her

7 I have submitted a formal complaint to the Hospital in regards to these matters. I want an assurance that if my mother ever needs to attend this hospital again some actions will have been taken to ensure no repeat of this disgraceful situation. I want to know that this will not happen to anyone who does not have a caring and educated support network in place to fight for their rights. I consider this a case of negligence, I fear that if I had not come back from France, my mother would be dead and this complaint would be into a very serious matter indeed. If this is the norm then it is a disgrace to the NHS which our present government hails as a flagship. In this case the Titanic would be more apt. 2. Edward Lamb By his daughter Sandra Lamb Edward Lamb had initially had a positive experience in Queen Elizabeth Hospital, but when he was transferred to Moseley Hall Hospital it was a different story. During his stay his daughter was unhappy about the lack of attention paid to the call buzzers when required and the communication from senior hospital doctors was very rude. My father, Eddie, was a very modest, Christian gentleman, so very gentle and yet so strong. He was highly intelligent and respected by many around the world. He was born in India in 1917, the son of a British soldier and an Indian mother. Aged 22, he enlisted in the Royal Navy and served on convoy duties in the North Atlantic, based in Nova Scotia. He then joined the Merchant Navy in 1941, seeing active service in many theatres of operation, including 'Operation Torch', which was Eisenhower's very first command. He was proud to remember King George coming personally to Liverpool to thank the Anglo Indians for their contribution to the war effort. Throughout his working life he had an exemplary record. He was a loving husband of over 54 years and a proud father of three children. He was a truly wonderful Dad and I feel so privileged to be his daughter. In September 2011 my father was admitted to the Queen Elizabeth Hospital (QEH), with a chest infection. After 11 days at QEH my Dad was discharged, having made a satisfactory recovery, but with a mild chest infection and finishing a course of antibiotics. A few days later he was taken to A&E at QEH because of concerns about a distended bowel he hadn t passed a motion in five days, since leaving the QEH. My mother accompanied my father in the ambulance and I arrived at the QEH at the same time as they did. Later that morning he was examined by a duty doctor who said he needed an enema. Apart from his distended stomach my father was told that his vital signs were good and there were no obvious health issues. We asked if he could be transferred to Moseley Hall Hospital (MHH) for rehabilitation and care, (as a rapid response nurse had suggested a bed was possibly available there). Dad had responded well to a short spell in Ward 6 the year previously and the Doctor authorised this transfer. We had expected the enema to be carried out straightaway at the QEH and the transfer to take place afterwards. As the day progressed the distension of his stomach became more acute and he was in more discomfort. He was however urinating without any problem. I went to the nurse s station to ask for the enema to be carried out as soon as possible, but nothing happened. This was despite several promises assuring the contrary. The third time I asked for the enema I was told that the ambulance was ordered and could arrive at any time, so the procedure would be carried out at MHH instead. Between and that evening my Dad was transferred to MHH from the QEH and was placed on Ward 6. My mother and I were with him on arrival at MHH. After checking that my father was OK I went to the nurse s station and explained that my father had been seen by a doctor earlier that day at QEH. I explained that the duty doctor at QEH had advised

8 he could find nothing wrong with him, even his blood pressure was normal and the Doctor was amazed that a man of his age was only requiring an enema, due to not having passed a motion in 5 days. (My father's medication of Senna & Movicol had been stopped during his original stay at the QEH, due to conflicting medication for the chest infection). Whilst at the nurse s station I also made it clear that we did not want Do Not Resuscitate placed on his notes. I then handed one of the nurses his blister pack and said that he needed an enema. During this conversation I noticed I was being given an irritated look from a lady who I was later told was a doctor. My father then had three teaspoons of food and refused the offer of coffee 30 minutes later, as he was exhausted and really needed rest. I asked the nurses when my father would receive an enema as we had been assured at the QEH that this would be done swiftly on arrival at MHH. The nurses told me they couldn t do anything until he had been checked by their doctor. When I asked when this would happen I was told they didn t know as they were busy with three new admissions (the last of which was my father). The doctor came later that evening, (this was the same person who had earlier given me the irritated look). I asked her when my father would have the enema. She said she would be the judge of whether an enema was needed or not. She did a bladder test (my father had been urinating normally at the QEH). I again questioned the bowel situation as his stomach had further distended by this late time and was extremely uncomfortable. She told me he needed a catheter and not an enema and she left. I had asked the doctor if we could undress my father as there were no nursing staff available and she agreed. My mother and I put on his pyjamas which we had taken and put him into bed, placing his dressing gown and wash bag in his cupboard. I went back to the nurse s station as we were becoming increasingly distraught about my Dad s distended stomach. I was told to go back and someone would come and see us. When the drugs trolley appeared I told the staff my Dad had not had any of his daily medication which we had brought with us. We were told that the medication in the blister pack could not be administered, as it was not prescribed by that hospital. This included a course of antibiotics, which had been clearing up a chest infection, Senna and Movicol for the bowel. They said not to worry as their own pharmacy would give new drugs. I do not know if this ever happened. Later in the evening my Dad had to urinate. I rang the bell for a nurse and there was no response. After 10 minutes of waiting, and with my Dad trying to get out of bed, I went to try and find a nurse, or failing that, a urine bottle from the sluice. There were no bottles at all. I went back to the nurse s station but no one was there. There was no sign of any staff all the way through any of the bays near my father, neither at the nurse's station, nor in any of the individual rooms, or the day room. I finally saw only three members of staff in a female bay, which was the furthest point from my father's bed, these were two orderlies and one nurse. I noticed whilst I was trying to find someone to help that a number of patients were crying out for help. I counted 18 assistance lights illuminated in the ward and therefore realised it would be some considerable time before my father would receive any help. When I got back to my father he was very distressed, trying to get out of bed, but not having the strength (20 minutes had passed since we first rang the assistance bell). Seeing no other option my father had to urinate in his bed. This undignified act severely distressed him. Eventually, the two orderlies I had seen earlier came and said that they would take good care of my Dad and that it was okay for us to leave. They said they would clean him up and give him new clean pyjamas. They then left to deal with other patients also needing care and we left as it was past the end of visiting time. My mother received a phone call just after 2.00am on 30 th September 2011, from a nurse at MHH. She told her that Dad was being transferred to QEH for an enema. Mum asked why he couldn t be given this at MHH and the nurse said he had refused to have an enema, saying he is a very stubborn man and is also refusing to pass urine. He was clearly distressed as surely anyone would be, considering the many hours of discomfort he had gone through and lack of compassion shown him. She went on to say my father would be at the CDU Department at QEH, although he may be transferred back to MHH, so it would be best to call before visiting. I then received a phone call from the same nurse at 8.20am telling me that Dad had just arrived back from QEH. I queried what she meant as I thought he was in MHH. She told me that he had been sent to QEH to have a catheter fitted, apparently the MHH had tried twice to fit a size 12 catheter, unsuccessfully. I want to know why a man who is passing urine normally needs to be transferred in the middle of the night and why a geriatric hospital is unable to fit a catheter. I also want to know why a geriatric hospital would try twice to fit a size 12 catheter and not go down a size, when it was obvious that the larger size was not successful and was clearly very distressing to my father. I also want to know why there were no urine bottles available in the sluice. The nurse told me that Dad doesn t like us very much and I replied that I wasn t surprised as he was nearly 94 years old and I said you wouldn t treat an animal like that. I asked what time we could come in and I was told visiting hours. I checked that this would not be until 1.30pm, which she confirmed. I asked that our love be given to my Dad and said that we would be with him as soon as we were allowed by visiting times. When we returned to MHH for visiting that afternoon we were horrified by what we saw. There was a curtain around my Dad s bed. When we entered through the curtain we saw that he was wearing an oxygen mask, he was choking on his phlegm, was sweating and was thrashing and rocking with fear and crying uncontrollably, (I had never seen my father cry). He was totally distraught. All he was wearing was his pyjama top that my mother and I had dressed him in the evening before and an incontinence nappy. He had not been changed as was promised and was inadequately dressed. My Dad managed to say to me that the doctors had been treating him appallingly. I had never seen him, or anyone else, in such a distressed state. We immediately pushed the alarm, but it took at least 30 minutes for a nurse to arrive. My Mum and I cleaned out the phlegm from his mask and throat and tried to calm him down this took nearly two hours. Once we had ensured that he would not choke to death if we left him, I went to the nurse s station. I demanded a full account of what had happened to my Dad. They said they would get someone to talk to us. I went back to Dad and put cold compresses on him to try and make him comfortable

9 A nurse later appeared to take my Dad for a chest x ray. He proved to be the only nurse who treated my father with respect and care. He took Dad s temperature and confirmed he now had pneumonia. A doctor subsequently came to see us after Dad returned from his x ray. She asked my Dad what sort of person he was, saying do you prefer straight talking or would you rather not know? He said straight and she said that she would give it to him straight, then said bluntly You re dying. I can t tell you how long you have. Anything you want to ask me? When he said no she left. She didn t speak to me or my mother at all. A consultant then asked to speak to me to discuss the fact that we did not want Do Not Resuscitate on my Dad s notes. He told me that he was in charge of MHH and another hospital. I was taken to a room, also accompanied by another doctor. The consultant said that he had been advised that we had requested that my father be resuscitated if the need arises. He said this would not be possible. I asked him why he would not resuscitate if necessary and the reason he gave was that he would not be willing to put his signature to it. I was so upset at this point that I said Who the hell do you think you are, you are not God. This is not about your ego. I brought my father here for an enema and to make him well, not to kill him. I then walked out and went back to nurse my father. Dad's previous consultant from QEH arrived at MHH (at the request of the MHH consultant) and observed that my father was not the man he remembered. I told him about my conversation with the other consultant earlier for which he said he was sorry. The excellent nurse from earlier put my Dad at ease. He became more peaceful and closed his eyes a lot, but opened them when asked. He seemed totally exhausted. I felt he closed his eyes to block out the nightmare of what he had gone through in the past 34 hours. Eddie died at pm on 30 th September Patient B By her son, Anthony Patient B was left in extreme pain during her stay at this nursing home, as she was not given her medication. Her son also found her in a highly agitated state as her catheter was causing her discomfort. She was also left partially undressed and unsupervised sitting in a chair in her room, during the height of summer. My Mum was a very active, intelligent and independent 91 year old woman who took great pride in her appearance and frequently travelled from her home in the North West to stay with us in Bedfordshire. In June 2012 she was unexpectedly diagnosed with Breast Cancer, which had metastasised into her bones. This diagnosis came as a great shock to us all and Mum was hospitalised for a few weeks in the North West and was subsequently transferred to a local hospice for palliative care. It was Mum s wish that she wanted to move closer to us so on the 18 th July. When she was in pain and symptom free, she was transferred by ambulance to a purpose built Nursing Home in Baldock, Hertfordshire that is run by one of the largest care providers in the UK and specialises in providing palliative care services. I am a registered nurse with over 25 years experience in the health and social care sector, where I have been a Registered Manager of Nursing Homes and Chief Executive of a number of large national care provider organisations. During the two weeks that Mum was in the Home in Baldock which is owned by one of the country s largest care companies she lost her dignity, received poor quality care and was generally neglected. However, it would not have required a professional opinion to realise that the quality of care given to Mum was unacceptable and some of the mistakes that took place should never have happened. When we visited it was clear that there were too few staff to deal with the requirements of the patients. There were call bells constantly ringing and residents shouting out for help throughout the day. Staff were rushed off their feet and unfortunately had no time to spend with more dependent residents such as my mother. Mum was also in heart failure and should have had her legs elevated to prevent them swelling. She was given a recliner chair, but it was never connected to the electricity and so didn t recline. On a number of occasions I specifically requested an adapter to be able to plug it in but it never arrived and as a result the chair never worked. The home is registered for palliative care with the Care Quality Commission (CQC) and Mum had a pain control regime from the Hospice to prevent the excruciating pain she had been experiencing whilst in hospital. During medicine rounds when I was present Mum was asked if she had any pain and if she said no, she was not given her medication. The whole point of pain control is that medication should be

10 given before the pain starts, but staff did not seem to have a fundamental understanding of this and the night before she died she was shouting out in pain when staff tried to turn her in bed. Whilst it was unbearably distressing for me to have to watch it was much more painful and distressing for Mum. She often had no way of getting the attention of nurses when she was in pain, because she frequently had no access to her call bell and there were occasions when her piped oxygen was not in place, making it difficult for her to breathe. Mum sometimes went days without food at meal times according to the daily log in her room even though we had bought a fridge for her room and put some of her favourite food in. Mum was unable to eat and drink unaided and I frequently found cold cups of tea in her room because nobody had time to assist her to drink. There should have been sufficient staff at the home to encourage and assist her at meal times but there wasn t. On one occasion Mum had used the commode during the day and when I visited in the evening the commode and toilet had both been left full of faeces, toilet paper and wipes for a number of hours with the hot tap left running resulting in the whole room full of the stench from the toilet and commode. It was awful. I asked a manager if the toilet could be cleaned and was promised that it would be done immediately and the matter investigated. Two hours later nobody had been to clear up. As I was leaving I asked a second time for somebody to attend to the toilet and again was promised it would be done immediately. When I visited the following morning it had still not been cleaned up. The smell was appalling and made me wonder if anybody had even attended to Mum during the night. If they had, they would have surely noticed the smell and done something about it. On another occasion I visited on a very hot day. It was 31 degrees outside and I found Mum with a woollen knee blanket over her knees that had partly slipped to the floor. Her blouse buttons were undone and when I removed the blanket completely I was horrified to discover that she was naked. No underwear, no trousers, no socks, no slippers and sitting on an incontinence pad. It was just appalling and sad to see my Mum in such a degraded state. I complained and asked why she was in this state and I was told that she had red areas on her buttocks and groins. I suggested that this could have been because of the incontinence control regime that was in place rather than proper continence promotion. Verbal reports did not match written reports, and answers to questions about her tissue viability changed on a daily basis. Expecting Mum to urinate on a pad on the chair was degrading and totally unacceptable, but I felt that staffing levels were such that they were unable to toilet her on a regular basis. One Wednesday night I visited and noticed that she was wearing a dirty night dress that she had taken off the previous Sunday, after having worn it for four days. It was supposed to be waiting to be washed, as it was clearly stained and dirty. I was informed that the staff did not know which night ware was clean and which was dirty even though there was clean night ware hanging up in the wardrobe. It was very degrading to put Mum back in dirty nightwear that had previously been discarded for washing and it was totally unacceptable. We wanted Mum to be as comfortable as possible with her own bed linen and be surrounded by her photos and belongings. Sadly not only was she wearing a dirty night dress, she also had the homes bed linen on the bed and her own bed linen was left in a drawer unused. When I visited the night before Mum died I found her in bed in an agitated state pulling at her catheter. I noticed she was wearing an incontinence pad and asked why she needed a pad if she was catheterised. I was told that her catheter had been bypassing urine for three days and the pad was to keep the bed dry. The catheter appeared to be causing a great deal of pain and discomfort to her and should have been replaced. Mum was lying in bed with a day catheter bag underneath her, I asked for her to have a night bag put on so that she would be more comfortable. The Registered Nurse in charge returned with a night bag and tried to attach it to the drain outlet on the day bag rather than removing the day bag first. These are the most basic of nursing skills, which staff should have known about. Mum was a very proud and dignified woman who up until three months previously had been smartly dressed, completely independent and able to care for herself and within two weeks of being in the home she had now had her dignity taken away. I realise that this may sound like moaning, but the last days of my mother s life should have been perfect, just like we had planned. Sadly, this was not to be. I complained to the Deputy Manager, having never managed to meet the Manager, about the quality of care that my mother was receiving and my belief that there were inadequate staffing levels. She apologised and offered me reassurance that Mum was being well cared for, but this was clearly not the case. I was later informed that the Deputy Manager had passed on my concerns to the Regional Manager and as a result she had been able to increase the number of staff on the shift. This was very evident during what sadly turned out to be my last visit. There were no call bells ringing in the home and Mum was comfortable wearing her own night dress and with her own bed linen on the bed. Clearly with the additional staff they were able to give residents proper attention and care. I have asked myself if my complaints are displaced anger regarding Mum s illness and subsequent death, but I don t think that they are. Being a service user rather than a service provider has been a very distressing experience for me and I truly wish that I had not arranged for Mum to spend her last days in the Nursing Home in Baldock. I did make a formal complaint but ten weeks later I have not received a satisfactory reply

11 4. George Alfred Robertshaw By his family George Alfred Robertshaw was admitted to the Huddersfield Royal Infirmary. His family were not happy with his discharge and feel that it was too soon for him to be sent home. My father was born in Leeds on the 9 th April He was the eighth child of eleven born to his parents, and all but one survived thro to adulthood and beyond. He survived the massive flu epidemic of when millions of people died. He married my mother in 1938 and then when war came he volunteered for the Royal Air force and was, after training, sent to the North African Desert, Palestine and other theatres of war. He was lucky again, he survived, but lost many friends along the way. Following his discharge he went home to his wife, they set up in business, started a family and got on with it. He lost his wife, my mother, in 1986 and decided then, that for as long as practicable, he wanted to live in his own house independently. As his age progressed, his health and ability to remain independent decreased until in 2005 aged 98 he had a hip replaced. This was followed by an increased care package being put in place for him to ensure both his safety and his health. This package and its benefits were put in place by Kirklees Social Services and everyone involved, both professionals, and others, could not be faulted. He celebrated his 100 th birthday in April 2007 and received his telegram from the Queen. Both he and his family were looking forward to his 105 th Birthday in April However, on Wednesday, February 15 th 2012, I was informed by my father s care team that he was unwell and could I call. I informed my brother James of the call from the care people and he said he would call on my father after he finished work. This he did and on arrival at my father s house the care people were there. I found him sat in his chair and he was fully compus mentis. His stomach was hugely distended resembling that of a pregnant woman. We stopped with him whilst the care people put him to bed and a while longer during which time we took a joint decision to ring for an out of hours doctor. Whilst the care people put him to bed we rang NHS direct for guidance and were told to contact the out of hour s service which we did. The out of hour s doctor arrived just after midnight and decided to give my father an internal examination. He could not do this because he couldn t get him onto his side. The doctor explained that the diarrhoea was probably getting round a blockage in his bowel, and he decided to admit my father to hospital, where there were more people and the examination could be effectively carried out. He phoned for an ambulance and my father was admitted to Huddersfield Royal Infirmary, Ward 15A at around 1:30am on Thursday 16 th February Both my brother and myself arrived shortly afterwards and were admitted to Ward 15A. There were two female nurses on the ward and they were both very pleasant and helpful. It was explained to us, on enquiry about seeing a doctor that they were all in surgery. This I could not understand as I thought all admittances had to be assessed in order to place them where they could be adequately treated for their individual problems. I thought either an assessment ward or casualty would have had doctors available twenty four seven. We stayed for a while with my father on Ward 15A to reassure him as he disliked hospitals due to his experiences the previous year in the Huddersfield Royal Infirmary, when the hospital sent him home with no care in place whatsoever. They had failed to inform his carers, or anyone else of his discharge. Whilst we were with my father at the hospital on Ward 15A he looked both worried and frightened. His stomach looked terrible and was sore to the touch (and he looked frail). He was sleepy and we left shortly afterwards with the intention of calling in the morning and returning later in the same day. Some time before 8.30am that same morning a female nurse called and spoke to my partner saying that my father had had his bowels open and would be returning home shortly and that home care would be put in place for lunchtime onwards. On receiving this message I rang Ward 15A shortly after but again before 8.30am and spoke to a male nurse who told me that my father had cleared his bowels and they were sending him home. He also told me, in no uncertain tone that was all they were going to do and that any operation, shouldn t be necessary and was out of the question because of his age and condition. My father was sent home in an ambulance that morning and the driver rang to ask if his care was in place as he didn t like leaving him in that condition. I told him as far as I knew his care was in place but following HRI s previous inadequacies I would check with the care people. He seemed reassured by this and said he would wrap my father in a blanket as he was only in his thin pyjamas. My partner then immediately rang the care people and advised them that my father was at home but that he was only in pyjamas and wrapped in a blanket. The care office said they would contact my father s care team and get them to go as soon as they could now they knew he was at home. The carers arrived at around 11.30am that morning and found him in his pyjamas sat in his chair. The fire was not on and he was very cold. He was extremely thirsty, thirsty enough to drink water from his tooth mug which was next to his chair. His carers gave him hot soup to drink, he was not weight bearing whatsoever, and they had difficulty in manoeuvring him and had to ring the office for extra assistance. They gave him stew for his lunch whilst they waited. His stomach was still both swollen and sore and hard to the touch. The care people physically lifted him out of the chair when the third person arrived and put him on his commode, as he was in so much discomfort. They then wheeled him into the front room, and put him to bed as they felt this was the safest place for him. The care people tried to contact myself and spoke with my partner to advise the family of the position. Their manager expressed their concern and asked what the family wanted to do. My partner asked their manager to contact the GP immediately for an emergency call and tried to contact myself at the dentists. My father s feet and legs were purple in colour and cold to touch; he was not weight bearing and was sat in his own excrement

12 I had by this time returned home and was informed of the situation as it stood. I rang the hospital and asked to speak to a matron and was eventually put through to someone. I enquired about his discharge and explained my concerns about it and was told that she hadn t been involved but would find out and call me back. A little while later I spoke again with the Matron who had found out about his discharge. During this conversation I was advised that if his condition was that bad I should ring 999 and get an ambulance. This was a direct solution but not a recommended one. The actual nursing staff at both Halifax and Huddersfield Hospitals at the hospital who were always both caring and helpful and also finally to his GP, who has always acted both professionally and considerately both towards him and also towards his family. Thank you, all of you. His carers manager, following her staffs concern and ours, contacted his GP. I believe she also contacted the hospital about re admittance but could not achieve this. She considered it to be an unsafe discharge. The doctor evidently also tried to get my father re admitted but was also unsuccessful and he could not get rapid response involved either. Nobody seemed to want to know! The doctor also considered this to be an unsafe discharge. His surgery rang back, telling them the doctor had no success on his efforts on re admittance. I received a phone call from his carers at about 5:15pm telling me that they had called as per and that my father was in bed whey they had left him and that they couldn t find a pulse. I immediately went to his home and found he had died alone, probably around 4:15pm hopefully in his sleep. My brother arrived at about 5:30pm and we contacted his doctor who called shortly afterwards. He explained what he had tried to do and that in his opinion it was an unsafe discharge. We were asked whether or not we would like a post mortem and after much thought and discussion with the doctor we decided against it as it would not make any difference to the outcome. Following my father s death I again spoke to someone and informed them of his demise and that I would be making a formal complaint re procedures. She told me directly that she would ask a nursing director to call me back within a day or two. This never happened. No call, no communication, no nothing. I again rang and I was told that they had informed whoever it may be and that they would remind them. I got the impression that the relevant person was present but did not wish to speak to me and was telling the person on the phone what to say. As of the beginning of October 2012 following the initial recognition of my complaint, I have received no communication from anyone and have had no explanation whatsoever offered to me. Had the seriousness of my father s condition been correctly diagnosed by a doctor on his arrival and admittance to the hospital, the outcome may well have been different. As it was, he was wrongly sent home, and nobody at the hospital was prepared to re admit this seriously ill, 104 year old man. As of consequence, he died in his home alone, under what conditions we will never know. My father was a strong independent person who served his country when it needed him, and yet the very systems he fought for, let him down when he needed them most. He deserved better! Our thanks should go to the following people who tried their best: Kirklees Social Services who cared for him at home, and who showed both consideration and compassion; as and when needed, especially his team of carers and their manager. District nursing who also cared for him at home as and when necessary

13 5. Patient A By her mother Patient A was admitted to hospital one evening. Over the course of several days her mother felt that the care and communication from the hospital was below the standard that they would expect. My daughter had a pain in her leg during the night of Friday 18 th May. During the day she had had three hypo s which was rare but all seemed to be explainable for various reasons. When she awoke she was sick, but seemed to shrug it off as just being tired, as she had not had much sleep the night before. I assumed the leg pain was a sprained muscle or something similar because she had played rounder s the day before at school. We took it easy on Saturday and Sunday, but when we woke on Monday she was in considerable pain. My husband took her down to the polyclinic who said that they could find nothing wrong, but that if it persisted they should make an appointment at the GP for Friday. Tuesday and Wednesday were fine and she went to school both days, as well as some after school activities. On Thursday, when she woke her leg was fine, but it progressively got worse throughout the day and eventually by late evening could not walk on it. She made her own way home from school and said she was in pain. She couldn t concentrate on her homework that night and she sat watching TV with me. Whilst sat there I noticed that there was a spasm in her leg. Her blood sugar level (bsl) was within range though, and so I was reassured that it normally spikes very high when there is an infection. When she got up to go to get ready for bed she couldn t and the pain got very intense, very quickly and she was sick with every wave of pain. We phoned the emergency doctor and they said that we should take her to A&E. She worsened and we phoned an ambulance. We assumed that it would be a reasonable time to wait, but were told that it was 2 3 hours. Instead of waiting we decided to move her and take her to A&E ourselves. When I got to A&E there were no staff around to assist and she was still vomiting and in considerable pain. Fortunately there was no queue for A&E and she was taken straight through the paediatric waiting room. The A&E staff could see that she was really unwell and she was taken straight to the paediatric A&E bay, where she remained all night. I later discovered that others had a five hour wait the same night. My daughter was seen by lots of doctors that night, orthopaedic, paediatric and others before eventually they realised that Ibuprofen was not doing much to relieve the pain, and so they gave her gas and air and some small doses of morphine. assess her or check on her condition the whole time we were there. I assume we are going to be put in another hospital, which is what is happening to children around us in other bays. My daughter is in a right state; her long hair was not tied back due to the speed of events unfolding so her hair is matted with vomit in it. It is to stay like that for some time but it was the least of my worries right now. At some point (next morning, Friday 25 th May) we are told that she will go to a bed on the children s day ward I think it is called ACAD. We were welcomed by a lovely nurse who gets fluids in her via a canula (she has a great deal of trouble as she has vomited so much her veins are sunken, though I am assured she is not dehydrated). She fixes up an intravenous insulin machine, alongside intravenous insulin and we await the operation. An ultrasound was agreed as the pain was so intense and not exactly where the appendix is. They wanted to make sure they were doing the right thing. Juliet found the ultra sound very painful and the results were discussed very quickly. My daughter did say that someone came to see her, she thought a diabetes nurse, it could have been she popped in, the Paediatric Diabetes Doctor definitely came. At that point he thought the operation was going ahead and she was getting excellent blood sugar levels, he also explained he wouldn't be there at the weekend, but that we should get the staff to contact him if there were any problems. Once the ultra sound was done the hospital changed their minds, no details but the keyhole investigation and appendix removal if needed could not go ahead, gynaecology team needed to become involved from what the ultrasound showed up. Very late in the day she was moved to the children s ward Tropical Lagoon and that is where our problems started. The Paediatric Diabetes Doctor and the Paediatric Diabetes Specialist Nurse (PDSN) had gone home. Monday seemed a long way away the PDSN works via a home team office on the ward Monday to Friday, 10ish to 5ish. It seemed the Paediatric Diabetes Doctor did not work weekends. The last advice we were given was no operation would take place today and that she can eat for a bit. She was still in a lot of pain, even on morphine, but had stopped vomiting and ate something. On Saturday morning we awoke and my daughter had had a reasonable night s sleep, she had also, encouragingly, been eating a little. We see the gynaecology consultant for the first time and are told that it seems to be an ovarian cyst, most likely pressing on a nerve causing the leg pain. We are told she will have a CT scan, which she does and all seems to be going well. They thought at this point that it was appendicitis and were planning to do keyhole surgery to investigate this further. Despite having Type 1 diabetes, a diabetes specialist was never sent to

14 We are then told she needs an MRI scan so the operation can be planned carefully in a way that is best for her, not exactly those words. The gynaecology consultant was lovely. She has years of experience and she tells it how it is. A team of doctors tell us the CT report indicates the cyst is a diameter of 10 x 8cm, between the bladder and the womb, I had assumed ovarian cysts were marble sized or there about and was very shocked and upset. It was also explained sadly there was a long waiting list for MRI scans. There would be no chance of an MRI today though she'd certainly try to get one, and as there was no realistic chance of an operation because it needed to be carefully planned and she needed to know exactly what she was dealing with. I attempted to give 10 IU of levemir and as she was eating properly and there was talk of taking her off fluids. I did ask if it should be the usual 19 IU. The nurses said no, wait for the doctors, I asked them over and over to get in touch with the Paediatric Diabetes Doctor explaining he had said that we could contact him if necessary over the weekend. When the doctors came, four of them in force said she's still on the drip, you don t need to give any Levemir. I calmly asked questions which they couldn't answer, because they did not know much about Type 1 diabetes. They kept saying zero levemir and getting crosser and then got some handwritten notes that I couldn't read and said "see, zero levemir". After this they wouldn't talk to me anymore. All my instincts were screaming give at least 10 units and sadly I ignored them. I didn't know about sliding scales, and to say no to not one, but four doctors was a big thing. I knew how tired I was the day before and so I trusted that those doctors knew what they were doing. As the day progressed the blood sugars slowly crept up to The nurse in charge of my daughter was anxious and she kept trying and trying to get the Paediatric Diabetes Doctor but no reply. In the end they got a doctor on the phone who said give 2iu. By this point her appetite had returned with a vengeance and she'd eaten a big supper 10iu worth and yet that Doctor on the phone insisted 2iu and 10iu levemir but not until 10pm, as it was still in her system from the intravenous and to proceed with caution as would still be active. I just do what levemir and rapid I think without being seen and tell nurses after it s done. No assistance offered for washing and dressing, she is in a right state now and still canulated so can do nothing for herself. Although I had initially planned to (calculate) the medication myself, when (a) Doctor confirmed, during the night, that is what I should be doing I no longer felt like I was sneaking around. My daughter woke on the Sunday morning with bsl of 5.4, relief I did the right thing by her with the support of the doctor in green (in the night) (no name, I am so grateful for his appearance). Finally the Gynaecology Consultant comes and says that the MRI won t be today, it will be first thing tomorrow. We sign a consent form with her gynaecology colleague, and by evening she is in agony once again. On every pain killer they can give her including morphine and I have to insist on a nurse helping me take her to the toilet as she is so unsteady and cannot use her left leg. A new shift of staff starts on Monday morning, my daughter has now been waiting since Thursday evening. Told quite early on the MRI office has no knowledge of an MRI scan. The MRI office at this point informs us that they need a doctor or Registrar to sign it off. The nurse is very kind and sorry for us and she phones and phones trying to sort this. I tell all staff quite firmly the Gynaecology Consultant is expecting to start her shift coming in to read the MRI scan report and plan my daughters operation. They say it is gynaecology in charge and they have to deal with it. They are not interested that it should be first thing this morning and I know for a fact the gynaecology consultant has been in touch with MRI office Saturday and Sunday. We had signed all the forms yesterday with her colleague. I have had enough and go to PALS Patient Advice and Liaison Service. They are sympathetic and take all of the details. The PDSN is very dismissive of what happened, says it wasn t a proper sliding scale, assures me 'you know what to do ' and 'you know what I'm like' and really gets my back up, her tone is sarcastic and condescending. The Paediatric Diabetes Doctor is horrified, he tells me and my daughter that no matter what anyone tells you, doctor or nurse, don t ever stop the levemir. He also explains that his hands are tied with regards to the MRI scan. He assures me he will write a very detailed care plan for the operation and I also say I fear we will be in hospital over the jubilee weekend with no PDSN, without him or any doctor for that matter, but he assures me he will plan, plan, plan. I point out to him and the PDSN it was not very good practice (my giving insulin that wasn t on her records), he is clearly concerned, and PDSN seems to think I am making a huge fuss over nothing. They both say independently that the nurses have confused the sliding scale. I say I have never heard of it or read about a sliding scale, I had to put my trust in those four doctors and they let me down. The PALs department sorts MRI scan by 14:00, which went well but I was still concerned by the spasm in her leg. Straight after my daughter is made as comfortable as she can be and I go to thank PALS who are delighted. We are told that the MRI office was being difficult, and that the Consultant had signed it off. The operation would be performed at Queens Hospital. We were told by the Gynaecology doctor that the left ovary might need to be removed. She will be first on the list for the operation tomorrow and she explains that she has such good knowledge of Type 1 diabetes, as she works with mums to be with type 1 diabetes. She is a lovely, lovely lady and we are all consoled and happy. My daughter is very positive and we are a little reassured because she thinks the operation will be simple and there is no need to go to Great Ormond Street, so hopefully no risk of complications. She has been here five nights in extreme pain and on morphine, barely able to walk. She is woken at 5am on Tuesday to prepare for the operation. They make the mistake of taking her to a treatment room, making her walk, so her pain increases with movement and she is tense

15 This nurse was jokingly telling my daughter off, she got stressed and shaky and they couldn't find her vein. She told them I've always only had one canula with attachments and I backed her up. At one point the nurse said if I don't get this canula in you, I will get the sack, you don't want that to happen, do you? She called for a doctor who had the worst bedside manner imaginable and basically, she had had a tough two hours of it, they gave up whilst muttering about anaesthetics being unhappy. What a bad start to the day with two staff unknown to us. Next a new shift starts and the nurse in charge of my daughter tries to remove the sliding scale machine intravenous insulin and glucose saying that machine is not allowed on the childrens ward I explain it s essential. When the anaesthetists come in they couldn't care less about the canula, said they'd do it in theatre in the blink of an eye, and were happy with the attachments on the one canula. She couldn't use both hands as the first canula came out and there was and still is bruising and was swelling and they swapped hands. They went through everything and disappeared. I reassure my daughter about the delay, she was first on list and to go down at 8am for theatre to start 8:30am. I remind her that the Gynaecology doctor deals with babies and when they arrive they don't keep to an appointment and I am proved right. The nurse (who we are getting to know well and is trying really hard to get her head round the bare basics of Type 1 diabetes, let alone the sliding scale) tells us that the Gynaecology Consultant has been called to an emergency eptopic pregnancy and when that operation is finished it is my daughter next. Eventually a porter arrives to take my daughter to theatre and there is an issue with her blood sugars and I can't remember precisely what but I clearly recall something was wrong the sliding scale needed to be adjusted after her bsl test and the nurse was not doing anything my husband and I were running round the corridors of the ward looking for the Paediatric Diabetes Doctor, who thank God was there and instructed the nurse how to adjust the sliding scale. I told him that the nurse had not a clue about Type 1; she was way out of her depth. He assured me not to worry. This was the second most frightening and serious event today, (the first was the nurse trying to remove the sliding scale) as you couldn t take her into theatre hypoglycaemic, I thank God we found the paediatric diabetes consultant or I dread to think what might have happened.. The Gynaecology Consultant and her colleague finally pop their heads round door, the operation went really well, the left ovary was in a state and had to be removed. I am sure they said fallopian tube and all right hand side okay but my husband says he thinks they said cyst was twisted around the ovary and tube and it was all taken away, so after Bank Holiday we will look into this. I asked about after care, my only disappointment with the Gynaecology Consultant was how blasé she was. She explained that we won't need to see her again, it s gone, it came out cleanly and their job is over. They say someone else will see her on ward, their job is done, I ask about possibility of other cysts, she is so young. They say no, she needn't be watched, very unlikely and then they are gone and we are being called into the recovery bay. There was no diabetes paediatric doctor supporting at the time of the operation or after. My daughter is in a great deal of pain, and a nurse is with her in recovery. She teaches her to breathe through the pain, but she is begging her for gas. The nurse explains she is unable to provide that. Back on the ward her blood sugars drop quite sharply after half an hour I know to treat as hypo and that the Paediatric Diabetes Doctor said to give a shot of glucose intravenously. The glucose infusion ran out and was not changed. However the nurses say no, bsl not under four. To them the Paediatric Diabetes Doctor s figures are set in stone and they can't get hold of him. My husband and I dare not leave her. Her fingers were sore and like pin cushions, in fact the theatre checked her bsl via earlobes and we found out she had already gone hypo once in theatre, but we were not told. Perhaps I made things worse by doing what I would do at home but I did not think it right she should go into hypoglycaemia in that state, doped up to the eyeballs on morphine and God knows what else. I gave her some of my own store of glucogel. I have never felt so frightened and alone and unsupported during what immediately followed. Common sense told me to use glucogel as she wasn't eating or drinking. I knew she should have a glucose infusion but the nurse would not do it as she wasn't under 4. Throughout the afternoon her bsl stays just above four because I have been giving glucogel, but the nurses will not take action until it drops below four. It eventually does drop below four at around 16:00, when it reaches 3.9, though still the nurse will not act. Staff find a bottle of glucojuice. I explain it does not usually treat hypos for my daughter and she needs two at home, also she is not eating or drinking, can she have it? The nurse does not know if she can have juice yet, no one has been round to advise about eating and drinking. Next she wanted to use the toilet but half the nurses have said do not move her and the other half have said you can move her and put her on the commode. She is eventually put on a bed pan, where she sits for two hours, it overflows, the electric bed breaks and she is left lying in a pool of urine. In addition there is blood seeping from her wound into the bed pan. We are trying to speak to a senior team member to address these issues but the nurse is calling the doctor and they are not coming. I leave the ward, the info desk is shut, the PALs office is not open at weekends or evenings which makes it difficult for people who need information outside of this time. I explain the situation in the restaurant and they advise I try the security office, though they are quite blunt with me and mumble something about it being five to ten minutes. When I get back she is still lying in a pool of urine. The security team have clearly not understood my request to send a senior manager, and whole host of security guards enter the ward. I explain the misunderstanding and the situation with my daughter to the Ward Manager and explained our situation, and ask for help. The Ward Manager still doesn t really seem to understand our concerns about hypoglycaemia. The night passes without incident as there is a nurse, after the shift change, who appears to be really caring and also knows a lot about what is going on. Though I do have to give the insulin dosage that I think is best as I am told the wrong information again. A day passes and no blood test is taken despite a Doctor clearly requesting it

16 On Thursday I ran out of needles, asking several nurses on two shifts to get them. We eventually get them from home, though my daughter has already missed supper at this point because she cannot eat and drink without the insulin. We also find out that the Paediatric Diabetes Consultant is on annual leave, we discover this from a visitor and not the Ward Manager who doesn t know this. Before we leave we have a meeting with the Ward Manager, I do a lot of talking and I am in there two hours. Nothing is really resolved or addressed. The Ward Manager is lovely and jolly but because she doesn't appear to understand. The whole meeting, I feel, is a waste of time, she doesn't even apologise. The next day is Friday. When she wakes she is in a lot of pain. Getting to the toilet and back takes an hour. The Paediatric Doctor is in the ward and he orders someone from gynaecology to come and look her immediately. The Gynaecology Consultant does not come through until late afternoon. The nurse says wind could be causing the pain and suggests a mint. When my daughter had the operation a lot of nurses have explained they pump you full of air, which can be painful, when it comes out again. I settle her in bed with the mint and put on her DVD and she settles. I have made an appointment to see PALS at 10:30 and I go down to the appointment. PALS is busy and the woman in there explains she is very busy and on her own today and asks me to wait in a room whilst she finishes dealing with another person. I decided to phone the Diabetes UK advice line and speak to a very helpful lady who says they cannot get directly involved but gives the telephone number of the Patients Association. Pals met with me and really seemed to understand, as has diabetes herself. I gave a list of 10 issues I wanted addressed. I explain my concerns, that we have had over the last few days and they seem concerned when I mention the Patients Association. She says 'no need to phone them, I will sort this out for you'. I do phone the Patients Association and they give me the number of the Chief Executive of Queens Hospital. The Chief Executives secretary is very abrupt, 'you've been to PALS' why are you phoning me, (in patronising tones). I explain that too many things have happened since we arrived and that I don t trust anyone anymore. When I return to my daughter she is like a different child. Her pain has settled, she has walked to the nurse s station and back. My husband is beaming like a Cheshire cat and says PDSN has been and understands about the needles and was looking for me. The PDSN is very unhappy about the fact we have made a complaint, even though I explain that it is not a complaint, but I was raising concerns about the way my daughter had been treated since she was admitted. She acted incredibly unprofessionally approaching my husband about the complaint at my daughter s bedside. Outside her office on the ward she accuses me of not keeping her informed of what was going on and I explain that her role is to support the patient and myself, and that during my time here I have never felt so alone and unsupported. Someone else must have also acted unprofessionally in giving her the information that we had made a complaint about her. I say I am a parent, not a doctor, I have never had an operation ever, I do not know what should have happened regarding my daughter s care but my instincts tell me it has not been right. I go back to my daughter and the Gynaecology Doctor is there, as a result of the paediatric doctor s phone call this morning. She apologises and admits that my daughter has been overlooked as she is not on a gynaecology ward, but that she is doing brilliantly and she was discharged. Hooray care at last

17 6. Mr Ronald Bowman By his son Nick Bowman Mr Bowman was being treated at the Panteg County Hospital on a ward that was especially for patients with dementia. He escaped several times and sadly one of the times he was found to have drowned in a nearby river. My father, Ronald Bowman was admitted to Royal Gwent Hospital on the 28/04/2012. At the time he was admitted to hospital my father was suffering with Meningitis. He was transferred to Panteg County Hospital as the medical team at Royal Gwent Hospital were not trained in a way which could best match my father s needs. My father suffered from Alzheimer s disease, and although they could look after and treat his physical health, they could not cope with his mental health needs. My father was moved to the Hafen Deg Ward of Panteg County Hospital as the Hafen Deg Ward was especially for patients with dementia. Although my father was suffering from dementia, he was not as ill as other patients in the ward. My family and I were happy for my father to be moved to this ward as we believed that this ward was much more appropriate for my father, and we believed he would be receiving the best care possible. Whilst my father was being treated in The Royal Gwent Hospital we had a meeting with the Adult Social Services Team. We were meeting with the Adult Social Care team to review provisions for my father so he could leave hospital. We were confident that my father had recovered from the meningitis that he had originally suffered from and had physically recovered. The team stated that my father could not go home, and we would have to find him an EMI home. They gave us a list of EMI homes in the area. Whilst we were searching for a suitable EMI home, a bed at the Hafen Deg Ward became available, which we are happy for him to take. We then had another meeting at the Hafen Deg Ward care team who were pushing for my father to be able to return home with myself and my mother. Unfortunately, my mother is currently in remission from cancer and has not fully recovered. We felt that my mother would not be able to look after my father, as she would not be able to cope with his Alzheimer. We feel that these meetings were a complete waste of time, as we live in Gwent, and the hospital is in Torfaen, so the care teams are completely different. We left these meetings without a formal care plan put in place for my father. This delayed his stay in hospital. We feel that there was a complete lack of communication between the two authorities, and problems lay with the fact that we lived in a different authority to the authority which Panteg County Hospital is in. It is unfair that geographical issues such as this, and the failure of the two teams to communicate, greatly prolonged my father s stay in hospital, which ultimately resulted in his death. My mother would visit my father in hospital as often as she could. My father, due to his Alzheimer s, was incredibly confused and was becoming very agitated. He would become even more agitated whenever my mother would leave the ward after visiting times were over. This was very distressing for my mother, to see my father in this way. The nurses on the Hafen Deg Ward would offer their reassurances, telling my mother that it was okay, and that they will look after him for you. My mother would leave the Hafen Deg Ward feeling quite comfortable that my father was being well looked after. We were particularly confident as one of the provisions of my father s care is that he was to be checked on by ward staff every 15 minutes. The Hafen Deg Ward had two large secure doors. This was to ensure that patients could not leave the ward on their own. This did not stop my father from being able to leave the ward. In total he managed to leave the ward three times. Each time we feel that he could have, and should have been stopped by the medical staff at the Hafen Deg Ward. We feel that as he was supposed to be checked on at least once every 15 minutes, that this would never have happened. The first time he left the ward alone he was luckily found by a member of the medical team. My father had been found by a member of staff whilst in the hospital car park. We raised our concern with the ward staff that we feel he was not being looked after appropriately. We were assured that he was being checked on every 15 minutes, and so believed that this was unlikely to happen again. Unfortunately, despite reassurances from the Hospital, my father did manage to escape from the ward again. This time he managed to get to the hospital reception area, where he was found by hospital reception staff and taken back to the Hafen Deg Ward. We were increasingly concerned by this, especially as he had escaped in the past and nothing had been done to stop it happening again. We were concerned that my father was not being appropriately looked after. My family and I believe that in his confused state, he was trying to get back to my mother. He had been increasing agitated over the past few weeks and the state he was in when my mother left after visiting hours was getting increasingly worse. This was understandably distressing for my mother, but the constant reassurance from medical staff that she should not worry as he was being well looked after, calmed my mother down. My father again left the Hafen Deg Ward. We are still unsure as to how he left, especially as he was supposedly being checked on every 15 minutes. We believed that as he had left the ward twice before, that the medical staff would be especially diligent when keeping an eye on my father. This was not the case. We have since heard from another member of staff on the ward that they believe my father may have left by opening a window in another patient s room. We received a phone call from one of the nurses at the Haden Deg Ward who called to say that my father had once again gone missing. My family and I were very concerned about my father s disappearance. We went straight to the hospital to see if they had found him. He was still missing when we got there, and so my family and I immediately joined in the search. On the following Monday, the police found his shoes at the bank of the local river, outside the Pafen Den Hospital. We believe that he was trying to cross the river to get home to my mother. A search was launched for my father; we were desperate to find him and were increasingly concerned about the attitude of the hospital staff. Out of desperation we made a plea to the media and our plea for information as to the whereabouts of my father was mentioned in her newspaper column, such was the desperation of our search. Sadly, three weeks later, my father s body was found 4 miles downstream of the hospital. My family and I are incredibly hurt and distressed that after my father was admitted to hospital with meningitis, and seemingly making a recovery, he was left without any of the basic care that he deserved and he needed. My father should have been cared for by staff at an appropriate level. My father was supposed to be checked on by staff every 15 minutes

18 7. Marjorie White By her sister, Carol Ann White Carol Ann White was unhappy with the care that her sister, Marjorie White, received at Blackpool Victoria Hospital after an ileostomy operation. Following discharge from hospital Ms White also unhappy about the level of care received from the district nursing team. My sister Marjorie had been suffering from Crohn s disease (also known as Inflammatory Bowel Disease IBD) for over four years, before deciding that major surgery and an extreme lifestyle change would help improve her quality of life. To achieve this improved quality of living, Marjorie was initially scheduled to have an ileostomy operation which NHS Choices have described as a surgical procedure to link the end of the small intestine to an opening in the abdomen (stoma) or to an internal pouch on 16 April On 11 April, she was contacted by a nurse from Blackpool Victoria Hospital and asked if she would take a free slot to have the ileostomy operation the next day. Initially, Marjorie refused, as she was concerned that she would have to come out of the High Dependent Unit (HDU) ward over a weekend, and that the stoma nurses would be unavailable to care for her after the operation. However, the nurse assured her that she would receive the same level of care whatever day she came out of the HDU ward, and confirmed that the stoma nurses would be available to give her the after care she would need after such a major operation. On Thursday 12 April, Marjorie had the ileostomy operation at approximately 1.30pm and awoke on the HDU ward at around 6pm. From that point on, Marjorie endured a level of aftercare that I can only describe as appalling. She woke up in the HDU ward in immense pain. Because the ward s nursing staff and doctor were unable to locate what was causing her pain, she was subsequently left for 36 hours in agony, before it was noted by a nurse not a doctor that the epidural injection she had been given after the operation had not been successful. She was then given self administering morphine, but was still in a lot of pain. During this time, Marjorie was not visited or even checked upon by her surgeon / consultant; nor did he take the chance to visit her during the remainder of her hospital stay. On Sunday 15 April, she was removed from the HDU ward to a mixed ward (15B) at which point she requested access to a stoma nurse who could help her change her stoma bag for the very first time. Marjorie s surgeon / consultant and his medical team had repeatedly made a point of informing her that she would receive aftercare from a specialist stoma nurse after the ileostomy operation; and after being told this on a number of occasions she fully expected to receive the help she had been promised. My sister also made a point of informing the nurses on Ward 15B that she was terrified of seeing the stoma without the support of a stoma nurse. However, when my sister requested to see a stoma nurse, she was told that the: stoma nurses do not work at the weekends and only work Monday to Friday. After she had been expecting to receive some professional medical assistance, Marjorie was shocked when a young male nurse presented himself and gave her a new bag and cleaning products. The male nurse told her to change the bag herself whilst he left her to it. Marjorie attempted to explain that she had no idea what to do, at which point he returned and read the instructions, before attempting to carry out the procedure himself. He then proceeded to tell her to keep her eyes closed whilst he tried to change the bag, unsuccessfully. The male nurse had to call for help from another nurse, who also told her to keep her eyes shut. Whilst the two nurses were changing her bag they made noises of disgust and behaved in an extremely rude and degrading manner to a very unwell woman, who was in severe pain. At this crucial point in her recovery process, Marjorie should have received specialist care. I find it completely unacceptable that she was subjected to this lack of care and what can only be described as ridicule by members of hospital nursing staff. This particular incident greatly impacted on her mental health, which has continued to deteriorate in the following months. On Wednesday 18 April, Marjorie was discharged from Blackpool Victoria Hospital. This was only 6 days after major surgery; which I still feel is an incredibly short stay after such a serious operation. She was primarily discharged into the care of district nurses, and had only three home visits before being signed out of their care even though she was clearly still very unwell. On 21 April, the emergency doctor was called out to my sister s home address as she was suffering from an extremely high temperature and feverish conditions. After checking my sister s condition, the doctor was unsure as to what might be causing her poor health and suggested it was a water infection, to which he prescribed antibiotics. She continued to be very unwell with high temperatures and feverish symptoms throughout April and May. During that time, she had been rushed back into hospital and had to endure waiting in A&E instead of being admitted back to the specific ward that had originally discharged her. She was eventually put on intravenous and oral antibiotics on the occasions she had to return to hospital. She also complained of bleeding from her back passage to all the medical staff she saw, and explained that this had started shortly after the ileostomy operation. She continually reiterated that she felt that this must be the key to her constant fevers. During these hospital visits, nursing staff did not suggest that there was an ongoing problem, perhaps as a result of the major surgery she had undergone; nor did they offer any investigative procedures. Only when my sister and mother insisted that she should undergo tests was an MRI scan suggested. She then subsequently had to wait four weeks for the MRI scan whilst continuing to be very sick. The MRI scan showed nothing. At no point, from the date of Marjorie s operation (on 11 April 2012) to the date of a consultation on 30 July 2012, did her surgeon and consultant communicate with her to discuss the outcome of the operation, or her subsequent ongoing sickness as a result of that same operation. It should also be noted that she had to continually chase the surgeon s PA for an appointment on July 30 to be scheduled, at her request. During her appointment with the surgeon, he asked Marjorie if she was happy she had had the operation. She replied that she was very unhappy; as her quality of life hadn t changed for the better at all (as he had said it would), and it was in fact worse. She reiterated that she had been constantly ill in the weeks following the operation. Having heard her response, the surgeon told Marjorie she was probably suffering from reactive depression, but there wasn t anything he could do about that

19 She also listed the current, ongoing problems she had experienced since having the operation, such as the bleeding from her rectum. His response was to prescribe steroid enemas, without offering any further tests which may have helped give him a diagnosis of what was causing my sister s pain and discomfort. After further weeks of continuing to be very ill and being offered no solutions or ongoing treatment(s) from her GP or the surgeon / consultant; it was eventually suggested by a stoma nurse that she undergo a CT scan. This took three weeks. The CT scan eventually took place on 18 June 2012, and showed fluid on the rectum. Marjorie was subsequently given a siegondoscomy and a biopsy on 14 August (a further four week wait) by another doctor. To date, my sister is still waiting for formal notification of the outcome of that biopsy, but via an informal conversation with a stoma nurse she was told she has Pouchitis (which can cause bloody diarrhoea and other, related problems). An emergency doctor had also confirmed this when he was called out, by myself, to a situation which had involved Marjorie s temperature becoming so high she was incoherent and feverish. The doctor confirmed that he had received the biopsy results back and that she still had Crohn s disease and also Pouchitis. He also reiterated that she should have been called back by the hospital to have the results confirmed although, at this point, she still hadn t been asked to attend an appointment to discuss the outcome of her tests results. I suggested to the doctor that we should arrange for her to see her previous Crohn s consultant, in an attempt to try and help her with the Pouchitis condition. The doctor agreed that this was the next best step. If I had not suggested this being the next available option for my sister, I do not think the option would have been put forward by the emergency doctor, nor any other level of NHS staff. Since the operation, my sister has not been able to sleep through the night. She now has to take sleeping pills; is sick on a regular, ongoing basis to a debilitating level with fevers and high temperatures, and as a consequence of this ongoing sickness and lack of after care (from her surgeon / consultant in particular, and also the HDU and Ward 15B staff at Blackpool Victoria Hospital); she has very little quality of life. Marjorie is now very depressed and relies on antidepressants. This has deeply affected her mental health, making it difficult and at times impossible for her to leave the house or lead any level of a normal life, and she is currently unable to return to work. She is living with her mother; who is 72 years old and has health problems of her own, and needs the support of a full time carer before she is able to return to her own home. Prior to the ileostomy operation, Marjorie was able to cope battling her Crohn s disease and remained extremely strong mentally, and had an inspirational, positive outlook on life even when she was in extreme discomfort. She also had an amazing sense of humour. Since her ordeal, however, she has had to rely on anti depressants; something I strongly feel she would never have had to rely on before this hospital trauma. She is still seeking a solution to regain her health and quality of life; and is very much a changed individual, sadly for the worse. 8. Stephanie Walford By Stephanie Walford Stephanie Walford was admitted to hospital in March 2012 and developed a post operative sepsis. She was unhappy with the level of communication between staff during her stay as well as the lack of attention to detail which almost led to her being given a drug she was allergic to. I entered hospital on the 29 th March 2012 and was an inpatient until 6 th May 2012, after I developed a post operative sepsis. I was originally admitted to Heybridge Ward through Accident and Emergency on Thursday 29 th March 2012, under the care of the urology team. A CT scan showed bilateral renal calculi and I underwent stent insertion under anaesthetic on Monday 2 nd April and stent removal and ureteroscopy on 23 rd April. Unfortunately I developed a post operative sepsis on Wednesday 25 th April and remained in hospital until Sunday 6 th May. On the whole the nursing care was fair. I am particularly grateful to the Charge Nurse who proved to be excellent, with consistently high standards. He showed compassion, knowledge and expertise and is an excellent example both to this colleagues and to student nurses. I also found that the care of one of the junior doctors on the urology team was first rate. Unfortunately, not all of my experiences were as good as they should have been, including with regards to pain management. When I woke up after my second surgery I was in extreme pain and found it very hard to cope with. Morphine was discontinued the day after I awoke, and the pain team commenced Ketamine to be taken along with the long term analgesia that I take for a preexisting condition. On the morning of the 25 th April I was told by the urology registrar that I would be discharged that day. At this point I felt frightened by the level of the pain I was experiencing. I was told that there was no urological cause for the pain. When I asked about the possibility of postoperative problems such as infection, I was told that this was unlikely as I was systematically well. By 6pm my temperature was 38.9 degrees, escalating to over 40 degrees during the following night. Although I am glad that I had remained in hospital it was obvious that the urology team wanted to send me home without eliminating possible underlying reasons for the persisting pain. After a course of IV antibiotics I was discharged home on Sunday 6 th May. This was a Bank Holiday weekend. I was given prescribed medication to take home, but received no paperwork or printed information. I imagine that it must be contrary to hospital policy to send anyone home without a discharge summary. A brief summary would have been extremely valuable to me, and would have facilitated continuity of care. At the time of my discharge I was still in very considerable pain. I raised this with several doctors who dismissed my concerns with very little consideration. This right sided loin pain had persisted after the sepsis had been treated. My GP referred me for an urgent CT scan which took place on

20 Monday of last week. This has revealed a 4mm right sided renal calculus. I am shocked and disappointed that no one sought to exclude the possibility of a physiological cause for my continuing pain. The pain team seemed obsessed with the idea that this was similar to the ongoing pain issue that I experience. It seemed as though none of the pain team were actually interested in listening to what I was telling them. At one point, when vomiting and nausea prevented me from taking oral analgesia. I was given Biofreeze to apply to my skin. This is simply absurd; extremely useful when suffering a muscular problem; but did they seriously expect that this would have some effect on my kidneys? Altogether I m afraid that this points to a very real problem with regard to the way that the pain team operates. I regard their inability to truly seek to deal with the pain that their patients are in as a very serious deficiency on their part, with the result that they were failing to address an acute episode of renal calculus. Sadly this was far from the only problem that I had. Generally there seemed to be very little communication between doctors and nursing staff. This left the nurses in a very difficult position. I was told one thing and they were frequently told something else, and not everything was accurately documented. One outcome of this carelessness with documentation resulted in a nurse almost giving me Oramorph, a drug to which I am extremely allergic, because one of the doctors had not documented my allergies on a continuation drug chart. I worked as a staff nurse in Broomfield A&E department until 2007 and it saddens me to have cause for complaint. Although there were positive aspects of care, my overall perception is that patient s pain is not adequately addressed. Despite constantly being asked for my pain score this seemed to have no influence on the prescribing and administration of analgesia. Why ask and document the pain score if nothing is done as a result? I felt so frustrated by the experience in Broomfield that I submitted a formal complaint to the Chief Executive of the Trust. I was not happy with the reply I received which seemed to apologise that I was unhappy, but did not apologise for the care provided or seem to suggest what measures were being taken to address the serious matters I had raised in my correspondence. I am now pursuing the complaint further with the help of the Patients Association and hope that they learn from these errors. I am not a troublemaker, nor am I personally seeking anything from pursuing this complaint, but these lessons can be invaluable in moving forward to help the services that don t match the majority of their first class care. It is clear from their policy statements and high quality facilities that the staff and management of Broomfield Hospital have the best of intentions in providing excellent care for patients. Many aspects of my own experience show that high quality hospital care is not beyond the staff, but that some issues that I ve raised show that there are still some obstacles in the way before it can be considered a success. 9. Yvonne Parker By Yvonne Parker Yvonne Parker was impressed with her care when she was admitted to Queen Elizabeth Hospital, Birmingham, in May, though her experience was not the same when being treated at the Heartlands Hospital, Birmingham. She was made to wait for long periods of time with no information on her procedure and on uncomfortable furniture. Prior to March of this year I had no previous significant medical history, indeed I have never had a week off work through illness during my 34 year working career. However, following a casual consultation with an out of hours doctor at Walsall Manor Hospital, where I work as an occupational therapist, he urged me to see my GP regarding a suspicious mole. My GP failed to give my mole the attention it deserved and it was eventually diagnosed as a malignant melanoma on my right thigh. I was subsequently seen by a very good consultant dermatologist at Solihull Hospital who explained that a 2cm wide excision would be required as a precaution. Following examination of my lymph nodes she asked me to see an ENT consultant, Mr Anari, at Good Hope who subsequently suggested that I have a right submandibular gland removed. On 14th May I was admitted to ambulatory care at the Queen Elizabeth Hospital at 8.00am and discharged home before 11.00am, during which time I experienced first class care from everyone, including admitting nurses, porters and surgeons. I left the hospital, albeit with a 4 inch scar, but very satisfied with my excellent treatment. I therefore expected the same level of service when I was admitted to Heartlands Hospital on 30th May. Following written advice, I fasted from the previous evening, arrived promptly at 8.00am at the Surgical Admissions ward and was seen by the anaesthetist at 9.00am who advised me that I would be second on the operating list. I then sat patiently awaiting my turn. After meeting with the admitting nurse I was given a gown to change into and TED stockings to wear. Then I was asked to wait in a large, hot room with chairs to sit on. At this stage I did not have any reason to question my treatment or assume anything was wrong. I waited while other patients left the waiting room for their operations and at 12.00pm I approached the nursing staff to enquire when I was going to have my operation. These same nurses did not once visit waiting patients to reassure them or to check on their nursing needs. I questioned why I had not had my operation, explained politely that I was supposed to be second on the list, had been waiting since 8.00am and was extremely thirsty and anxious. I was told by a young ward clerk that everyone has been waiting since 8.00am. The nurse in charge appeared hostile to my request that they check when my operation would take place. At this stage, I asked my husband to come and sit with me as I was becoming very anxious and had threatened to leave the hospital without my operation being carried out. He arrived later and subsequently had to take emergency annual leave from his job in order to be with me. On my behalf he tried to advocate with the sister in charge. In an attempt to pacify us she showed us the operating list with full names of patients and procedures that were taking place. Fortunately I did not have my glasses on so I was not able to identify patients. Surely this brings into focus issues

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