Part E

qPart E Podcast

 

Voices from Students and Newly Qualified Practitioners 

Primary, secondary and tertiary care – Laura Grimley, adult nursing student

For patients and students alike primary, secondary and tertiary care can be very different, offering differing levels of support. Primary care can involve many opportunities to observe nursing practice and gain valuable skills in consultations and assessment. However the opportunities to independently treat patients or acquire clinical skills can be limiting at times, due to the very nature of the care setting. Secondary care largely involves a hospital setting. The danger as a student nurse, particularly as a second or third year is falling into a HCA role. Although every level of basic care is important in the nursing role and at every stage of training you should be practising these skills, it is also important to develop your advanced nursing skills.  

Making a safe environment – Sophie Lane, learning disability nursing student

I was working on a very busy ward in one of my first placements when an elderly lady with dementia was admitted. Upon arrival she was very confused and crying, it was sad to see someone so confused and not knowing what was going on. Myself and another nurse spent time with the lady talking to her, explaining where she was and reassuring her that she was in a safe place. I was left alone with the lady as the other nurse was called away. We talked for a long time about her past and her family which calmed her down and made her feel more relaxed. I helped the lady to get her personal belongings out of her bag and put them on her table, which she was able to see and were of comfort to her. I believe that spending time listening and talking to patients creates a positive environment for health, if I were confused and scared I would like someone to take the time to sit with me to listen and explain what was going on. – Sophie Lane

Policy – Samantha Vanes, newly qualified mental health nurse

I’ve found one of the hardest things is being made aware that there is always a bigger picture which means that although you want to be able to provide the best care for the people you’re working with; it’s not always easy to do so because of the political and economic environment. Realizing that in nursing there are so many factors to take into consideration including systems that we may not see beneficial but learning how to work within these systems has been challenging. – Samantha Vanes, 3rd Year Mental Health Nursing Student 

Multidisciplinary working – Samantha Vanes, newly qualified mental health nurse

Whilst working on an acute ward there was a gentleman on there who had been diagnosed with dementia. This gentleman would become very confused and angry at times and as a result there was an increase in his medication, however after a few days there was a noticeable change in his behaviour and presentation. This gentleman who was normally very active on the ward and able to engage with others was becoming more subdued and sedated. This was observed by me and the nursing team, it was discussed within a multi-disciplinary team and it was noted that although the gentleman’s level of aggression had reduced the medication was having a negative effect on his quality of life and reducing his ability to be able to engage with the people around him and his environment. The decision was made as a team to reduce his medication and to introduce alternative interventions that would be more beneficial to this man. After a few days of the changes the gentleman was again becoming more animated and spontaneous in his actions, he was once again able to participate in activities which he enjoyed and able to eat his meals without assistance, which would have greatly improved his sense of personhood and protected his dignity.

This was a positive experience for me of nursing care because an intervention was introduced and it was through the observation and care of the nursing team that it could be reported back to other professionals and the family and changes could be made. By being aware that medication is not always effective and that as a nurse and the larger multi-disciplinary team other interventions could be introduced that are more beneficial to the person and their family.  

Learning from other professionals – Siân Hunter, child nursing student

I have really enjoyed working with other professions as it enables you to understand how closely they all work together, and how everyone’s input enables professionals to deliver a complete package of care. It also highlight’s the fact that as a Nurse is the one that can often have the most interaction with a patient therefore you also have the knowledge and understanding of the patient/family situation that may need to be passed on to enable another professional carry out their role. For example, a young girl that had anorexia was really upset that something had been put on her diet regime that she really did not like and did not understand why it had been put on, and she disclosed this information to me and my mentor as we had a good therapeutic relationship. We were able to contact the dietician and explain what had happened and discussed how it could be resolved. The dietician then reviewed and visited this young girl, aware that she was upset and did her best to resolve it and explain the reasons why it had been done and changed it to something she liked, which made her much happier. I realize that the Nurse’s role and inter professional working is important not only for the patient but for other professionals. 

Cultural awareness and good care – Laura Grimley, adult nursing student

When on placement I helped in the care of a patient who had come in with their sister-in-law and children. I knew from various aspects; clothes, accents, address, that the patient and relatives were from a gypsy traveller background. It is common for women in this culture to have difficulties with literature, due to leaving school early, or moving around when in school. Therefore to get the best level of care for the patient, tactfully reading the form which needed to be filled in for pharmacy assisted the patient without embarrassment.  

cwPrimary, secondary and tertiary care pg 595

For patients and students alike primary, secondary and tertiary care can be very different, offering differing levels of support. Primary care can involve many opportunities to observe nursing practice and gain valuable skills in consultations and assessment. However the opportunities to independently treat patients or acquire clinical skills can be limiting at times, due to the very nature of the care setting. Secondary care largely involves a hospital setting. The danger as a student nurse, particularly as a second or third year is falling into a HCA role. Although every level of basic care is important in the nursing role and at every stage of training you should be practising these skills, it is also important to develop your advanced nursing skills.

Laura Grimley, adult nursing student

Primary care is when health care is provided in the community by GPs. Secondary care is when patients are referred by their GPs for treatment that cannot be given in the community. This type of care cannot be accessed by the patient directly. Tertiary care is care provided by specialized services provided by centres that have diagnostic and treatment facilities not available at general hospitals.

Hannah Boyd, adult nursing student

Primary care is provided by General Practitioners, dentists, opticians and pharmacists and these are usually a patient’s first port of call with queries regarding their health. Secondary care is provided by hospitals and community health teams. Tertiary care is a field in which practitioners work in a specialist area with the relevant facilities and knowledge, patients are referred to these usually through primary or secondary care agencies.

Julie Davis, learning disabilities nursing student

The various levels of care provision are a vital part of providing effective healthcare. They are like a referral system to ensure that patients see the right person to assist with their needs and calls upon varying specialities. I work in a residential service and one individual had severe epilepsy, which was very difficult to manage. On one occasion, this individual had a prolonged seizure, which we treated with rescue medication as prescribed in an epilepsy protocol. The medication was not effective so I called for an ambulance (primary). The ambulance service decided to take him to hospital and alerted the epilepsy nurse specialist (ESN) (secondary) to be on-hand when they arrived. Once in hospital, the patient was stabilized, assessed by his neurology consultant (tertiary) to establish the plan of care and future treatment.

Michelle Hill, newly qualified RNLD

Primary care is the first line of contact with health services this may be with your GP or practice nurse or this may be the first instance of contact whereby an individual is suffering symptoms that they may not have experienced before. Secondary services are specialist services that a person may be referred to by a primary care provider. Those in secondary care will have more expertise in the area relating to specific symptoms that a person is experiencing. If a person is experiencing health problems that cannot be dealt with in primary care they will be referred to secondary care. This continues further to tertiary care if an individual is in need of more specialist treatment for a particular health condition, this could be for palliative care or oncology for example.

Samantha Vanes, newly qualified mental health nurse 

cwUnderstanding the NHS pg 599

To understand the purpose of the organization and what its original aims are, and to understand the changes in people’s lifestyle and changes in society.

Hannah Boyd, adult nursing student

Understanding the history of the NHS helps us to understand the current organization and changes in the delivery of care as it tells us the ideology behind its creation and the drawbacks and problems that were discovered as it developed and how these were met, solved or are ongoing. We can learn from its history what to avoid doing again and why we have the structures that are now in place. It also shows us that it is a dynamic evolving institution and has to be so to meet the changing demands on it.

Julie Davis, learning disabilities nursing student

You have to know where you have been to understand where you’re going. If you don’t understand the history of the NHS, to understand when shortfalls and errors have occurred, then the same mistakes are likely to be made again. You must reflect upon practice, identify good and bad and develop new practices based on these reflections.

Michelle Hill, newly qualified RNLD

Having a wider knowledge of the NHS and its history is important in order to develop a deeper knowledge of strategies which have been launched in the past and may or may not have worked. It also helps to understand where funding and decisions are made.

Laura Grimley, adult nursing student

I think that having an understanding of the formation and history of the NHS allows me to have a better understanding of how care is delivered today. I believe that having knowledge about the ideals behind the launch of the NHS in 1948 and the developments that have been made through trial and error since then, are fundamental to the future of the organization and its employees.

Sophie Lane, learning disability nursing student 

cwPublic health pg 607

I think it is imperative to apply evidence-based practice and the most up to date gold standard frameworks for working. Looking at the department of health’s website and the latest news and press releases, along with reading nursing journals is key to achieving this. –

Laura Grimley, adult nursing student

As a nurse it is a responsibility of mine to make every contact count with the individuals that I see. There are certain health inequalities that can be seen nationally, including diabetes, obesity, mental health and heart disease. Having an awareness of what factors can make individuals more susceptible to these health problems such as smoking or poor diet is important as if I identify that an individual is a smoker and has a family history of heart disease I have a responsibility to use the contacts I make with that person to find out if they are aware of what the health implications are from the life style they have and how they can be supported if they should chose to make lifestyle changes that can lower their risk of developing health problems. These problems are not only very damaging to them and their families but have a high economic cost, by being aware of the prominent public health issues then as nurses we cannot only guide people to leading a healthier lifestyle but we can help reduce the economic burden of these health issues.

Samantha Vanes, newly qualified mental health nurse 

cwInequalities in patient care pg 613 

Since becoming a student nurse it has become evident that people who have a learning disability can face huge disadvantages and inequalities when/if they are trying to access the health care system. This is due to many factors, but one of the biggest barriers is communication. The lack of communication and understanding around learning disabilities makes it difficult for people to access healthcare services and therefore has a detrimental effect on their overall health.

Sophie Lane, learning disability nursing student

I have seen a number of inequalities in the patients in my care. For example a person with dementia or learning disabilities I have cared for has had difficulties with understanding and communication. These difficulties can lead to inequality as they may not receive the care or help they need due to the lack of understanding of others in the setting. As their nurse I ensured I read their case notes and worked closely with their families and carers to understand their way of communicating, what cognitive difficulties they have and what I could do to help them have a good experience. I also spent time talking and getting to know them so I became a familiar and, hopefully, trusted presence for them.

Julie Davis, learning disabilities nursing student

I feel that health inequalities commonly occur with ‘unpopular’ patients. Those patients with repeated admissions, with drug and substance abuse, patients who either are or come across as overly demanding or rude, those patients with poor hygiene, and lastly some patients from specific ethnic back grounds (particularly gypsy traveller backgrounds). I have a background in complaints in the NHS. Therefore this training and experience has given me the skills to objectively deal with challenging situations. Being able to not take things personally, and being able to analyse others’ personality types in order to strategize the best method to defuse a situation and build a rapport with a challenging individual in order to collaboratively work. I think in patients with repeat admissions are patients which have not had a correct plan of care put in place for them. Another reason could be that collaborative working has not been effectively achieved. I feel that as nurses we should also be keen in some anthropology, having a basic understanding of other cultures enlightens us and therefore prevents xenophobic discrimination.

Laura Grimley, adult nursing student

I have noted that although mental health problems can affect anybody in any socioeconomic environment, there is a high proportion of individuals that suffer with mental health problems that come from a low socioeconomic class. It is important for me to be holistic and to consider what factors may be contributing towards an individual’s mental ill health. I believe in mental health it is important to be aware of what the person finds important and how they view their own recovery. These factors can be very different on what inequalities each individual has experienced, it is my responsibility to ensure that each person is treated fairly.

Samantha Vanes, newly qualified mental health nurse 

Working with others 

I was doing a placement in a care home and I noticed that all the residents done was sit in the day room and not do anything else. I decided to bring this up with the nurse in charge and asked if it would be ok if me and the other student organized some activities to do with the residents to help fill up their days. The nurse said that this was a good idea and we managed to get the staff involved as well. The other student and myself decided that doing some exercise classes would be a good idea as it would improve the residents’ health. All of the residents really enjoyed this and said that it made them feel happy and they got to know the staff better.

Hannah Boyd, adult nursing student

I worked with a multidisciplinary team to ensure a patient with learning disabilities and behaviours had a successful stay in hospital. We produced a hospital passport and worked closely with the patient, the ward staff and family to ensure a comprehensive care plan was drawn up. The patient was able to attend hospital and successfully have the care she needed as a result of this.

Julie Davis, learning disabilities nursing student

cwWorking with other professionals pg 624

I think working with the physiotherapists and occupational therapists has helped me to understand their role a bit better because I got to see the work they carried out and the difference their input made to the patients.

Hannah Boyd, adult nursing student

While attending a conference I used the opportunity to network with other attendees. Learning what their role entailed has given me the knowledge to know who to turn to with particular problems for advice or solutions.

Laura Grimley, adult nursing student

I have had the opportunity to work with many other professions from psychologists, psychiatrists and occupational therapists. I have gained a better understanding of what each profession does and how they contribute to the overall care of people suffering with mental health problems. This has helped me to understand my role as a nurse as what I contribute to service user care is very different but I value the specialist knowledge that other professions contribute. I feel that the role of the mental health nurse is ever expanding and I am often faced with situations that are very complex and needs input from a range of professionals. I have realized that mental health nurses have a lot of autonomy in their role and the time we spend with service users is essential in building therapeutic relationships and enabling a collaboration between the nurse, the service user and other professionals.

Samantha Vanes, newly qualified mental health nurse 

cwPsychological approaches pg 639

I have used the person-centred care approach to help give me a better understanding of my patients as this approach helps you to see the whole person not just the illness.

Hannah Boyd, adult nursing student

Basic communication skills use psychological approaches in assessing a patient. Using open questions, having an open posture. Equally reading the other person’s responses, what they say, how they say it, their posture, for example if they look nervous or embarrassed. On assessing a couple with a baby it was important to carefully listen to their version of events and see their reaction. My mentor thought that their story and injuries of the baby were consistent, however certain procedures are still followed.

Laura Grimley, adult nursing student

In my role I would say that I have used psychological approaches such as CBT in order to help those I’m working with to better  understand the things they are experiencing or how they can challenge their own negative thought processes rather than me using approaches in order to better understand the service user.

Samantha Vanes, newly qualified mental health nurse

The Biopsychosocial Model of nursing incorporates an individual’s psychological state of mind as well as their biological and social circumstances. Using a holistic approach and taking into account someone’s psychological state of mind is fundamental to ensuring right care is provided for each individual.

Sophie Lane, learning disability nursing student 

cwSociological perspectives pg 652

I think having background knowledge of Sociology has been really useful, understanding how socioeconomic status can effect people’s health & the cycle of deprivation, it helps you to understand the person/family that is standing in front of you, and not to judge them or their circumstances. It also can help you identify ways that you may be able to empower and support people to improve aspects of their health.

Siân Hunter, child nursing student

Knowledge of sociology is useful because it provides nurses with skills that help us see things socially and how they relate and impact with each other. This is useful for the care we deliver because again it helps is to see the whole person not just the illness. It also provides us with a better knowledge of societies that patients could potentially be living in, this helps us to educate our patients to help prevent them from becoming ill again.

Hannah Boyd, adult nursing student

It is important to have knowledge of sociology because people have different views, beliefs, attitudes and ideas about life style, appearance and behaviour and are influenced by these sociological factors. We need to have an understanding and a respect of these ideologies to build a good working, caring, professional relationship with every patient in our care.

Julie Davis, learning disabilities nursing student

cwKnowing your own prejudices pg 658

I think it is important to understand your own preconception and prejudices because it will help you to treat all patients fairly regardless of your own thoughts or feelings.

Hannah Boyd, adult nursing student

It is important to recognize these as they can influence our behaviour and practice with patients. However as professionals we must recognize we have preconceptions and prejudices but ensure they do not affect our working practice. We must treat all our patients equally with a high standard of care and empathy.

Julie Davis, learning disabilities nursing student

As a professional working with vulnerable people, it is important to assess my own values and beliefs and ensure that I don't impress these onto the people I am working with. Each individual is entitled to their own beliefs and when supporting people it is vital to fairly represent their views accurately and not to influence them with your own. Also, everyone is entitled to equal, high class healthcare. Nurses must not allow their own prejudices or preconceptions to affect the level of care they provide.

Michelle Hill, newly qualified RNLD

I think it is important to analyse theses aspects, perhaps through reflection, to help overcome these, to improve patient care, so the code is upheld and ultimately so that high quality care is given equally to all.

Laura Grimley, adult nursing student

cwPositive experiences of the NHS pg 675

 I helped care for a patient that could not thank the staff enough for all that they did for him. This patient realized that we were always extremely busy as a result of staff cuts, but he said that he was proud to be cared for under the NHS because it had saved his life.

Hannah Boyd, adult nursing student

I have had many patients thank me for being there and for the NHS. Without a service (now being decommissioned) the person who had a cardiac arrest on the car park would not be alive. Their relative thanked us for being there. The numerous elderly people I have helped care for, with some support and physiotherapy were able to go home.

Laura Grimley, adult nursing student

I have attended conferences and cared for patients who have expressed their satisfaction with the care they received from the NHS. They were happy when they were treated with dignity and respect. They recognized the demand on resources and staff and were impressed by the dedication of the professionals they had met. –

Julie Davis, learning disabilities nursing student

Throughout my placements as a student I would say that more people are grateful for what you have done for them, than there is those that are unhappy, but you will always hear about the mistakes that have been made.

Sarah Parkes, learning disability nursing student

cwNursing in developing countries pg 681

I think that I will have a better educational experience as we have better teaching facilities in the UK, than they have in a developing country.

Hannah Boyd, adult nursing student

As much as we complain about how bad our experience has been in hospitals, GPs and other medical appointments I do believe that we have great facilities compared to other countries and at times we take it for granted.

Sarah Parkes, learning disability nursing student

cwViews of nursing training in developing counties pg 682

The Western world has the resources to meet the educational needs of student nurses. Hence we have good resources and equipment and both public and private health service facilities to be mentored and learn and applicate our skills. In developing countries these resources may not be available as the economic climate may be poorer.

Julie Davis, learning disabilities nursing student

I think similarities would be the overwhelming amount of knowledge which needs to be retained, the responsibilities even as a student. Work–life balance and demands. The management of care services, which at the best of times can at first appear to be organized chaos at the best of times.

Laura Grimley, adult nursing student

cwCultural awareness and good care pg 684

When on placement I helped in the care of a patient who had come in with their sister-in-law and children. I knew from various aspects; clothes, accents, address, that the patient and relatives were from a gypsy traveller background. It is common for women in this culture to have difficulties with literature, due to leaving school early, or moving around when in school. Therefore to get the best level of care for the patient, tactfully reading the form which needed to be filled in for pharmacy assisted the patient without embarrassment.

Laura Grimley, adult nursing student

I cared for a lady where her cultural aspects of care were the thing that got her through her illness because she felt that God had a way of sorting everything. I helped support her in by helping her go to the chapel in the hospital.

Hannah Boyd, adult nursing student 

 

Voices from Nurses 

Leadership, decision making, communication, person-centred care – Jillian Pawlyn, Senior Lecturer, Learning Disabilities, De Montfort University 

As a Senior Lecturer my role is to provide expertise and leadership on learning disabilities within modules across the school. I teach on a range of these and other related modules for the education and training of student nurses and post-registration students. I also support students and practitioners in clinical settings, work on External Income Generation and have international activity. Developing and delivering Technology Enhanced Learning is an area where I have a specialist interest.

I have been a nurse since October 1994 and have a particular focus on Profound and Multiple Learning Disabilities (PMLD/PIMD). I wanted a job I could ‘get into’ and enjoy, a job where I would look forward to getting up in the morning and face a new challenge and where I could ask questions and seek new insights. I wanted a career where I could really get to know people, and grow and develop as a person and as a professional.

The best thing about being a nurse for me is receiving a smile and the reciprocal sharing of time and space with a person who has PMLD/PIMD. We can take these pleasures for granted. When they are freely given it is a fantastic reward.

The hardest part of being a nurse is when no matter what you offer and can do, it is just not enough. Sometimes it is very hard to decide when the end has been reached, especially if the real goal is still a long way off, almost in sight but out of reach.

A specific instance I recall was supporting the person to make a decision regarding their health. The person (mid 50’s, mild learning disability, difficulty reading and writing) was admitted into an acute general hospital in an emergency, having had a heart attack.

A passer-by had found the person lying in the street and phoned an ambulance. When the person arrived at hospital the admitting doctor ordered a series of tests and presented a consent form which the person was unwilling to sign and was vocal and verbally aggressive towards staff. I was the named community learning disability nurse for the person and was called in to talk with them and explore their capacity to consent. After a long and detailed conversation I determined that the person had capacity and understood the risks of not having the investigations and tests. I informed the hospital staff of my findings. This was not welcomed and the person was immediately discharged home. Some fifteen years later the person continues to live a healthy and active life, living with their cardiac condition. The patient was happy with the outcome; they did not want the tests and understood the risks to life of further heart attacks and not having the investigations.

The person lived alone and had one relative living nearby. Initially the relative was frustrated expressing that they wanted the hospital to ‘sort out the relative’s heart problem’. After a quiet conversation together at the person’s home the relative reached a comfortable acceptance of the decision their loved one had made and we were able to discuss the person’s preferred response should they experience a similar health emergency.

I felt the outcome was positive for me. As the nurse in a ‘patient advocate role’ it is important to support individuals to express their views. This is especially so when they face complex health decisions and it is imperative that capacity is tested. However, at that time, I felt frustrated that the hospital staff had not handled the situation more sensitively, had the person been given clear information in a quiet and unhurried way, with time to ponder the words and ask questions then they surely would have reached the same outcome as I. (N.B. This event occurred before the Mental Capacity Act 2005.)

My advice to a student nurse would be that the patient/person is always at the centre. Focus on the person first; value and respect the people in your care; work as partners in their health and remember differences add richness and diversity. Every one of us will at some time in our lives experience being a ‘patient’ and be a recipient of nursing care. I believe we (nurses) must use our experiences to enrich ourselves, to nurture empathy and ensure individually we embrace the 6 Cs throughout our practice. 

Patient journeys, person-centred care, stigma and sociology and psychology – Jessica Partington, Substance Misuse Nurse, Offender care

I am a Substance Misuse Nurse working with individuals suffering from opiate addiction. My role is to support individuals in their physical and psychological recovery from heroin, including detox from opiate substitute medication. Currently I work within an Offender Care Substance Misuse Service, and I am based within HM Prison Service.

I have been practising as a nurse for around 6 months. During my formative years I had always been interested in healthcare, treatments and the medication used to treat various illnesses. However, the thought of becoming a nurse was a not one that had ever crossed my mind until the loss of my mother to cancer at the age of 18. I witnessed first hand the physical, emotional and organizational challenges that nurses faced; but despite this the excellent compassionate care that the nurses provided for all their patients. Such a life changing event led me to reflect and re-evaluate what was important in life. The most important thing to me has always been and will always be other people.  

I love the fact that every day is different for me as a nurse, interesting and exciting for varying reasons. I like to be challenged, but most of all I strive for that breakthrough moment when I know that I have influenced an individual’s life for the better. In that moment I feel pure joy.

The hardest thing about being a nurse is never having enough time and making sure that everything is done. There is also that niggling feeling that you never truly know enough.

As a Care Maker and newly qualified nurse, I fundamentally believe that every individual person is important and has value. Such a belief has never been more important than in my role as a prison nurse working with individuals who suffer from substance misuse problems.

Within the prison environment the patient population have been judged and sentenced to prison for a variety of offences. Prison is designed to provide justice for offences committed, however it should also aim to reducing reoffending through rehabilitation. As a substance misuse nurse I form part of that rehabilitation and strive to help my clients recover from their addiction in a way that keeps them safe and able to lead fulfilling, law-abiding lives upon release. 

The clients whom I come into contact with have often been marginalized from society due to their criminal convictions. As a result, some have lost contact with their friends, families and loved ones. To compound this, addiction and the stigma attached to substance dependence can leave individuals feeling low in mood, suffering from low self-esteem, and feeling that they do not have a voice. In short, they might feel that they have lost everything.

I worked with a client named Lloyd (name changed to a pseudonym) who was prescribed methadone for his previous addiction to heroin and had spent a number of years in prison for drug-related offences. He felt extremely low in mood and believed that his loved ones saw only an addict and not a person. He felt that he had let his family down due to his offences and heroin addiction, and appeared to be resigned to his life remaining in a chaotic cycle of addiction.

I used motivational interviewing techniques whilst working with Lloyd to explore what he saw as a meaningful future and what his hopes for this might be. He discussed wanting to become drug free and that he wanted to make his family proud by being able to hold down a job and stay out of prison. However, Lloyd saw this as unachievable as he had not been free from substances for over ten years.

During the conversation I listened to Lloyd’s hopes and fears and helped him reflect on why he might not have succeeded in the past; whilst exploring tools and plans to help him succeed in the future. Such plans included a slow detox from opiate substitute medication with psychological support from individual sessions and group therapies to prevent relapse. Within the discussion I focused on the positives, such as despite his current issues he had maintained contact with his family. We also talked about the opportunity that prison gave him to change his life through intensive support and rehabilitation. I also highlighted the worth that he had to his loved ones and the fact that he deserved to have the life that he dreamed of.

Lloyd was extremely surprised that I talked to him about the value that he gave to others and the fact that he deserved to be happy. He disclosed that nobody had ever pointed that out to him and that so often he felt worthless. Lloyd looked at me almost in shock and said, ‘you really care, don’t you’. In that moment I knew that I was making progress and Lloyd was beginning to contemplate what his life might be and that he could achieve his dreams. I have never felt so happy and honoured to have some small part in offering Lloyd hope.

My advice to student nurses would be to always look for opportunities to learn and experience new things. Talk to senior nurses and even directors of nursing as they are there for you and are often more than happy to help. Think outside the box and try shadowing in another organization or even the Department of Health! Go for gold and do not be afraid to ask! Never lose focus of what brought you into nursing and always stay true to your values.

 

Voices from Patients 

Joe Way’s story

Visit Joe’s website at: www.joeway.co.uk and make a donation to the charities Joe’s story supports.

Joe was born with Angelman Syndrome, a rare chromosome disorder. We didn’t realize anything was wrong at first. Over the course of months we realized there were problems and eventually 18 months down the line he was diagnosed. Over the course of the next year Joe had a lot of trouble feeding and various different issues, then we came across a whole different issue which was totally unrelated to Angelman Syndrome, the disability he was born with, called Stephens-Johnson Syndrome, which is a reaction that could have been viral triggered or by one of the drugs he was on, which basically makes your skin blister inside and out. This went on for 6-8 weeks during which he spent most of his time in hospital on the High Dependency Unit. Towards the end of that time he then became septic and had organ failure and was rushed to another hospital. We were told he wasn’t going to make the journey and to say our goodbyes. But he made the journey and made an excellent recovery over the next 4-5 months. Once he’d recovered he was left with a new lot of problems such as that he’d become oxygen dependent and his lungs deteriorated over the next 18 months. He had a lot of problems with his kidneys; he had renal damage and was on a huge amount of drugs to compensate for his kidneys and other difficulties with his digestive system. He was back at home and we were caring for him most of the day and night. We had night staff in, a nurse, most nights a week. We also had respite care during the day, especially if we’d been looking after him at night. He started to deteriorate more and more and in the last two months of his life we took him in to hospital via ambulance three times in the middle of the night because he needed more care than we could give him with the equipment at home. The way Joe died in the end was very dignified. We were in a hospital full of people we knew very well. We had a fantastic nurse on at the time, his consultant, both sets of grandparents and his sister said goodbye. He was four and a half years old.

The Children’s Hospice South West gave us a lot of support on the phone and through letters and cards, even though Joe was sometimes too ill to go to the hospice. The hospice isn’t just about families going to have a rest and holiday, there’s a lot of day to day support that goes on behind the scenes that helps families like ours go through difficult times and I think a lot of that’s not realized.

Joe was special because even through everything that he went through, he’d look at you with a big smile and he would make you feel like you didn’t have anything to worry about. He had an air about him that would turn your day around instantly. He was a very beautiful little boy and we miss him a lot. The way that he dealt with his conditions inspires me to do better things and make the best of the opportunities that you have.

Malrotation and blocked bowel – Lisa and Thomas, birth to 3 years old

Thomas likes Dinosaurs, our pets, his teddy bear ducky, running, climbing and little boy activities.

When he was born he became ill very quickly – diagnosed with Malrotation, transferred to Bristol from Exeter for surgery at less than a day old. At 2y3m, he had a blocked bowel due to adhesions, again transferred to Bristol from Exeter. At 2.5, he broke his arm! Then at 2.6 – he had another blocked bowel.

When Thomas had his first blocked bowel, we took him into A&E with vomiting and abdominal pain, they admitted us because of his previous history of malrotation. I was 36 weeks pregnant with Thomas's little sister, we were seen to very quickly and shown to a room. A nurse on the Bramble Ward in Exeter (I can’t remember her name, I think it was Naomi) took care of us immediately, showed us to our room, which was a side room (isolation) as he could have had gastroenteritis. She was really kind, showed us the parents room, and as we needed to stay with Thomas, she brought us another bed to sleep next to him as I was so large. Naomi checked in on us constantly and as Thomas progressively became worse, she got help promptly and the doctors came to us quickly and we were soon transferred. What made Naomi so special was that she was due to finish work, but came in the ambulance with me and Thomas to support us all the way to Bristol thus making herself late to finish work.

When Thomas broke his arm 6 weeks later, as soon as she saw us in the hospital in a children’s ward, she recognized us and came and spoke to us. It was late at night and I had a 3-week-old baby by then! Thomas had started recognizing her by then too. The next day she brought us a teddy bear with some tape on his arm to match Thomas's cast.

Naomi also recognized us again, 2 weeks later when we ended up back in hospital when Thomas became sick again, his bowel had blocked again. She seemed to help organize our transfer to Bristol again and ensured Thomas had enough pain relief when I became concerned he was too sore. She also helped me with my 5-week-old daughter into the ambulance.

All of the nurses in the ward were also amazing with ensuring I was getting enough food and water as I was breastfeeding my daughter.

The care was personalized, I felt she empathized with me as both my husband and I were struggling both mentally and physically. She seemed to go above and beyond to help us cope. She also tried to speak with Thomas although he was not very talkative!

She helped us to cope at a very difficult time. We had so much going on with a difficult pregnancy, a new baby, Christmas, New Year and a sick child! Thomas, I think, appreciated a familiar friendly face.

Other things that helped us greatly during our various trips was the fact the nurses always did my 'obs' before Thomas' so he was less nervous about them. When Thomas was struggling in Bristol after having my daughter, even though they were short staffed, they would always take my daughter for a walk so I could comfort Thomas or talk to the surgeons without distraction. 

They would also bring him things from the play room and rotated toys so he wasn't as bored. All of these little things helped us and therefore helped us to stay strong for Thomas.

When Thomas went down for his bowel operation the second time, the theatre team let Thomas have 'Ducky', his special friend/teddy with him right to the end. 

Before each procedure we were scared. The first time he became ill, I had been expecting him to get a blocked bowel at some point, but not whilst I was on maternity, I had been off of work less than a week when he fell ill. I hadn't prepared anything – as Thomas was late to arrive I thought 4 weeks was plenty of time. But when he became ill, my husband had to prepare my maternity bag, we had to take all my maternity notes with us, my platelet count had been falling too, so I was needing regular blood tests and had been referred to a doctor. So we were very stressed. 

After having Abigail, Thomas broke his arm whilst chasing one of our cats – I was feeding his sister. Again, we were shocked, it was my husband’s first shift back at work, I had to phone him and say I think Thomas has broken his arm. My husband, of course, thought I was joking! I felt like such a failure, I couldn’t cope with two children. Seeing a friendly face (Naomi) telling me that ‘you know, actually, these things happen’ was reassuring. She spoke to the doctor and we were able to go home for a few hours and bring him back in early in the morning. Due to Thomas's previous hospital experience he was nervous (as we had had to help restrain him for IV cannulas to be placed) and that helped him. Generally as long as he was with us (me) he was fine.

When he had his third op (second blocked bowel), I went all the way down to the theatre with him, which I think helped both of us. I also held the mask to his face whilst they began to anaesthetise him, it helped him because I'm mummy, but that really upset me watching his little eyes roll back.

I'm a veterinary nurse and I think this experience in the medical field has helped me as I've seen lots of gory bits. Understanding the medical terminology that is often spoken around us also helped.

Learning disability, with thanks to Mencap  – Sue and Nicki, 14 to 26 years old

My name is Sue. My daughter Nicki died two years ago aged 26, after receiving appalling care. She was ill and wasn’t going to have a long life but she shouldn’t have died the way she did. It’s just cruel. Nicki was a happy, sociable and generous girl, she loved making people smile.

It all started when Nicki was 14. She started having fits, sometimes 20 a day. Sometimes she was so weak she could hardly hold her head up. It was a frightening time for us all. When she was 18 she had a brilliant doctor. At her funeral he said: ‘She was just a fantastic girl – an ill girl, but an inspiration to us all.’

This great care continued on the ward, Nicki only had to press a buzzer and there were nurses at her side. So we knew compassionate and professional care was possible. They were fantastic in that ward. We’ve actually got pictures of Nicki lying in the bed – she’s got something like 22 teddy bears around her. And they used to get the blue gloves and blow them up for her to make balloons. And because it was nearing Christmas, we took in a small Christmas tree and put it on her bedside cabinet. The next day we went in and they’d decorated it all. She had a TV in her room that they’d arranged for her. They used to sit in a chair and feed her. The physiotherapist was brilliant too; he used to come in every day and even when Nicki didn’t feel like doing anything he’d make her laugh and get on her good side.

Just a few months later Nicki was admitted to a different ward where staff treated her so badly that she rapidly deteriorated. The list of shocking treatment is endless. Sometimes it felt like they just forgot about her. They put Nicki’s food, drink and medication out of her reach. Because she hadn’t eaten or drunk anything for so long, her veins collapsed so they couldn’t take any blood – for two weeks she was just a pin cushion. Nobody would listen to me and I knew exactly how my daughter was feeling and what she needed. 

I will never forget the Nicki who sat with us, bellowing at the telly when Arsenal were playing. The Nicki who drank tea like it was water and who came home with arms of flowers as random presents. That’s my Nicki. I will never forget.

Paranoid delusional disorder – Anonymous, 47 years old

I am a carpenter by trade and I still do some carpentry work for friends and family although I have been unemployed for a number of years. I can’t recall any specific instance of nursing care but my community nurse at Chase Farm Hospital has often helped me gain insight into some of my shortcomings.

The nursing care was not that good and I felt isolated and resentful at times. The nurses were nearly always polite and calm. Afterwards, I was very relieved to leave hospital.