Welcome to the second edition of our patient’s stories. Back in 2015 we published our first collection entitled ‘Compassionate Care – A series of first hand patient stories’. Here is our second edition; Continuing Compassionate Care .
Closely considering the clinical outcomes of our patients gives us an opportunity to redesign practices that focus on holistic, integrated care and are person centred. There is a strong moral and ethical case for a health service that centres on what matters to individuals. Increasing evidence shows this approach leads to better outcomes and benefits for patients, carers and the community. Our aim is to ensure that patients have a central role in all aspects of their care. And, importantly, they receive an experience which not only meets but exceeds their expectations. Putting patients at the centre of everything we do not only improves their outcomes, it improves the outcomes of the community we serve. It means we can make a real, meaningful impact in the long term health of everyone in East Lancashire.
The heart of our success at East Lancashire Hospitals NHS Trust is the involvement of our patients, their relatives, carers and the community. This is enshrined in the NHS Constitution and has become a key indicator of the NHS performance nationally. High quality care is something that we all aim to deliver to our patients. Quite rightly, a patient’s experience of care sits alongside safety and the use of clinically effective treatments as the core to a quality service. Continuing Compassionate Care goes one step further, and here we tell the story of how patient involvement has helped to both improve treatment and care and, in some cases, change the lives of those concerned. Patients are the reason why we work for the NHS.We know that a positive experience during care leads to positive clinical outcomes. If a patient feels listened to, involved in their care, respected and cared for they will respond better to medical and nursing interventions. It will also help patients to manage their own journey through care. The importance of listening to and evaluating patient experience cannot be overstated, moving away from “doing to” patients, to “working with” patients and carers. The patient experiences you will read in Continuing Compassionate Care are evidence of how we increasingly do this, yet these are just the tip of the iceberg. From listening to and responding to individual patient experiences through to analysing, reporting and acting on huge amounts of clinical data helps to improve clinical outcomes for NHS patients in East Lancashire and across the country.
P R O F E S S O R E I L E E N F A I R H U R S T Chairman of the Board
M R . K E V I N M C G E E Chief Executive
Sheep farmers are tough and think nothing of an 18-hour working day during lambing season. But, says Lewis, nothing was as tough as overcoming pancreatitis
While I recovered from the operation, my pancreas didn’t. It had begun to die and I was again in excruciating pain. Various treatments were tried to save the pancreas without success, meaning an operation to remove it was the only solution. Every step of the way there has been one person behind me, supporting me, which I owe my life to. That is Daren - Dr Subar. He is the most amazing person I have ever met! An absolutely fantastic surgeon, wonderful person and a mate for life. When I was admitted for surgery I was terrified. I had been informed of all the risks. A 50/50 chance of getting through it. Bleeding out on the table if a main vein is hit. Ten to twelve hours in surgery. I am strong, tough and have a high pain threshold, but it crippled me. I was brought to tears, I didn’t know how I was going to get through it. But the theatre team were outstanding. They reassured me, I felt comforted that they would do everything they could to save my life. Before closing my eyes I glanced at the clock; it was 8:04am. I came round from the anaesthetic to Dr Subar asking if I could see the clock; it was three minutes past 12. I thought the operation had taken just four hours, but he explained it was the following morning. I had been in theatre for 15 hours. The care I received on Intensive Care and Ward C14 was exceptional; the nurses were worth their weight in gold. I couldn’t have asked for a better hospital, better nurses or a better surgeon. I don’t think I’d have got through it without Daren and his team. Thank you for giving me back my life.
We’d gone for a weekend in the Cotswolds and taken our little border collie pup. On the last day, we’d been round all the cute villages, and I was playing football with her when it started. The pain was similar to that of food poisoning at first, but within 10 minutes I was in excruciating pain. My girlfriend rang for an ambulance.When the paramedics arrived they had to pull my hands off my chest - I was clawing at my chest because of the pain! I was taken to hospital and for 24 hours I can’t remember a lot; I was in and out of consciousness with the pain. Tests showed I had developed pancreatitis. After a fortnight I started to show signs of recovery, but I was losing so much weight. I was 97.8 kilos in hospital and when I left three weeks later, I was 80 kilos. During the next 12 months I had several more attacks; each time becoming weaker and weaker. I was still trying to carry on with the farm work but the pain was making it almost impossible. And the pain; I wouldn’t wish it on my worst enemy. At Royal Blackburn Teaching Hospital I underwent tests to see just how badly my pancreas had been affected. The tests showed that I had a five centimetres long pseudocyst. At a follow-up appointment and it had increased to seven centimetres, by week three it had grown to nine centimetres. After four unsuccessful attempts to drain it, I had an operation to remove it. But within three weeks the cyst came back again and grew to 12 centimetres. It was obvious that this was not going to be so easily resolved so the decision was taken to remove my gall bladder and pancreatic duct. They also re-drained the pseudocyst.
I can’t say how amazing the feeling is to get my life back.
Premature baby Harry Murdoch was critically ill following his birth at just 25 weeks. As Harry’s second birthday approaches, his parents Stephanie and Lee explain why they wanted him to participate in clinical research
Ultimately, we kept thinking about all the children in the past who were born early; who took part in studies and helped researchers learn more about treating premature babies.Without those babies taking part in research, today’s amazing treatments wouldn’t exist and Harry simply wouldn’t be with us. I get emotional just thinking about that. It’s nice for us to know that Harry taking part might help future families who find themselves in the same position we were in. Harry’s condition stabilised under the care of the NICU team, and despite a dip in his platelet count at two-months-old, thankfully he didn’t require another transfusion and his overall health improved little-by-little as the weeks ticked by. Finally, we were able to bring Harry home exactly 16 weeks after he was born. Though initially he needed oxygen support at home for his underdeveloped lungs, Harry was taken off oxygen. Now, with his second birthday coming up in November, he weighs a healthy 27lbs. He’s making good progress and Harry’s doctors are delighted with his health. With a birth as premature as Harry’s, it really was like a rollercoaster. At the beginning, everything was bad, but then he’d have a few good days. But we couldn’t have been in better care and since he came home we have been really well supported by Harry’s consultant and the community teams from NICU and paediatrics. To any parents in our position considering taking part in research, we would say that Harry was very well looked after, carefully monitored, and we felt supported by the staff every step of the way. We feel proud to have given something back.
It was my first child and I was enjoying a very normal pregnancy, expecting to give birth around the typical due date of 40 weeks. Having no family history of premature births, it was a huge shock when, with little warning, Harry was born at only 24 weeks and five days. He was put him in the category of “extremely pre-term” and was quite poorly. Most babies born following a standard pregnancy will weigh between 5lbs 8oz (2,500 grams) and 8lbs 13oz (4,000g). But Harry weighed only 1lb 14oz (870g), the equivalent of two tins of beans. From the outset, Harry was treated for a range of complications in the Neonatal Intensive Care Unit (NICU). These included bleeds on the brain, sepsis, meningitis and a disease of the eye called Retinopathy of Prematurity (ROP). Harry also required 10 blood transfusions and a platelet transfusion. Doctors said our son had only a 50-50 chance of survival, and that most surviving 24-week pre-terms have lasting disabilities. Because Harry’s body was effectively being used way too early, every system in his body was encountering problems.We were terrified.We didn’t know if Harry would live. Then we were handed a life line. One of the NICU research nurses approached us about the possibility of Harry taking part in a research study called Planet-2. Planet-2 (short for Platelets for Neonatal Transfusion 2) is a National Institute for Health Research study to improve treatments and patient outcomes. This particular study is helping medics to better understand when to give transfusions of platelets to premature babies with low platelet counts. After being given a comprehensive explanation and assurances over his health, we agreed to Harry taking part. The medical team were fantastic at going through all the details and allowing us to make the best possible informed decision. We were given a lot of information and our research nurse assured us they would never put him at any increased risk and that he would be really closely monitored.
Chris’s wife was diagnosed with dementia in 2010. Here he shares their personal story, memories of their life together and “the tender care my wife and I received”
The staff were very considerate of my feelings. They discussed everything with me and my son. Everyone was kept informed of the palliative care Edna was receiving, there were no problems or misunderstandings at all. I think she knew that things were not right. Despite the Alzheimer’s there was an understanding and she had started to give up. It was difficult, but I took great comfort through those very tough times of her last days, listening to the nurses talking to her. I could hear them calling her ‘sweethear t’ and ‘darling’, taking great care with her and being gentle with words of encouragement ‘come on sweethear t’, ‘let me help you love’.The way they spoke displayed immense kindness. Edna’s dignity was always respected. It was lovely to see her wearing a ladies floral nightie, rather than the traditional hospital ‘gown’. This simple act reassured me that they were seeing the person, not the Alzheimer’s. When it comes to the end, you realise there is only going to be one outcome. And even though you are prepared, when it happens, it is still a huge shock. I have taken comfort from the fact that we did the best we could do for Edna, and feel deeply fortunate that we had the very best people around us to help. My wife was a fantastic lady. She had a very sharp brain, brilliant in fact, and it was not easy to watch that slip away, such a waste at 74. However, the tender care my wife and I received during her time at Royal Blackburn Teaching Hospital was absolutely superb. I watched the nurses and doctors at work and realised it is not just a job to them; it is a vocation. Not everybody can do it, but they can and they were magnificent.
Edna and I were together 55 years; courted for 3 years and married 52 years. My wife did everything around the home from cooking to decorating.With a Mensa score of 147 Edna was in the top two percent intelligence rating in the UK. In 2010 she started doing things which at the time struck me as strange and insignificant, but would go on to rob her of herself. Her spatial judgement started to diminish, and over the next three years things got progressively worse until 2013 when she was diagnosed with Alzheimer’s. Throughout the diagnosis, testing and getting the medications right, the doctors were wonderful with her. My wife also received wonderful care at the Memory Clinic, they were so considerate and compassionate. The doctors would ring regularly to see how we were getting on. I felt my wife was being looked after and I was supported. Over the following year things got steadily worse. I was determined to give Edna the best possible shot and decided that I was going to care for her for as long as possible. We got the most fantastic help from social services, they were second to none. They arranged for Annette to come every week and take Edna out in the car. They would go for a trip and have a meal somewhere, it worked absolutely perfectly. It also gave me some respite as well. I had a very good team surrounding us. I knewmy wife so well, and I knew that due to the Alzheimer’s routine was important. I created a tight team of carers – including my son and his family. It all worked incredibly well until 2017 when it got bad; really bad. I had reached a point where I just couldn’t cope–even with the help and support I was receiving. I had terrible feelings of guilt and self-recrimination as I knew I could no longer care for my wife. Social Services arranged for Edna to go into day care, which turned into residency. She was happy there, and I was thankful of the care they provided. It was while Edna was in the residential home that she became very unwell. She had a number of tests, and it was found that she had a punctured bowel. It was a terrible shock. Due to Edna being so frail operating was not an option. I had to come to terms with Edna receiving palliative care rather than treatment. It was difficult but it was the right decision for Edna.
Hospital worker Sanam experienced care from the other side after her baby daughter, Ava was born 12 weeks early and describes the dedication of neonatal staff as “truly outstanding”
I was looked after really well by the trust all the way through my pregnancy and all the care we received as a family was wonderful. I am not biased as someone who works for the Trust but am saying this as a service user and my husband feels completely the same way. The nurses and doctors were all brilliant, extremely caring towards the babies and very friendly and approachable. I want to reassure other parents whose baby ends up in NICU that their child will be in safe hands and will be looked after in the best possible way and they will be supported as parents as well. Don’t be afraid to ask any questions or if there is anything you are unsure of, as the doctors and nurses are so supportive and explain everything really well. Burnley General Hospital was like a second home to us for a while and Ava was affectionately known as a ‘diva’ on the wards as although she is a placid and happy baby, if she is hungry, she won’t wait and you know about it! NowAva’s home and her brothers dote on her and love her to bits. The fact Ava came home from NICU without any oxygen, feeding on her own, gaining weight and developing normally for her age despite being born at 28 weeks is a wonderful outcome.
I work in the Dietetics department and found myself seeing things through the eyes of a patient after giving birth to Ava at 28 weeks of pregnancy. Ava was born weighing 2lbs 6oz and spent the first nine weeks of her life in the Neonatal Intensive Care Unit (NICU) in the Lancashire Women and Newborn Centre at Burnley General Teaching Hospital. Our first baby Safwan was born slightly early at 35 weeks but did not need admitting to the Neonatal Intensive Care Unit (NICU). Our second son Rohaan was born at 31 weeks and he was cared for in NICU for about six weeks. He has cerebral palsy and is affected by that. As I’m prone to pre-term labour, I expected to have Ava early but she arrived even earlier than we thought after my waters broke at 28 weeks. She was premature and tiny, and was admitted to NICU where she spent nine weeks. Ava was small but luckily she needed very little support. She was on ventilation for a very short time and then on assisted breathing with CPAP for a few weeks. The care we received on NICU was absolutely brilliant from admission to discharge. All the nursing staff and doctors were caring and supportive not only to the babies on the unit but also to the parents. We felt we were always involved in Ava’s care and given any answers we needed and regular updates about everything. Any support we needed was given readily and nothing was too much trouble and the breastfeeding support was excellent. All this wasn’t done in a really professional and friendly way. I know there can be both good and bad care but I can honestly say that on NICU, all the care was faultless and superb.
A mum whose whole world changed after a lifesaving transplant shares her story with patients and visitors at Royal Blackburn Teaching Hospital, to raise awareness of kidney donation among the Asian community
That day, at Manchester Royal Infirmary, I underwent tests to check compatibility with the donor kidney and the following morning I had surgery. I had gained the lifeline of a new kidney. Today, I’m doing really well. The transplant has transformed my life. I work as a Projects Officer for the One Voice Network. Together, we’ve done so much to raise awareness in the BME community about organ donation; educating people and tackling myths. I have been very lucky. I received a kidney and have been given my life back. Every day there are people in the UK dying waiting for a transplant. Many of them will be from the BME community as less organs are donated.When I ask people if they would accept a kidney, they say ‘yes’. But when I ask them if they’d donate one, they say ‘no’. I think a lack of education and understanding about donating plays a huge part.We can make the change by talking openly. Although many black and Asian patients are able to receive a transplant from a white donor, for many patients the best match will be a donor from the same ethnic background as they are more likely to have matching blood groups and tissue types.
At the age of 23 I began experiencing sharp pains and cramps in the stomach. Being normally fit, and never having been ill before I visited my GP who carried out a number of tests. I was surprised when the results showed there was an abnormality with my kidneys. I was referred to Royal Blackburn Teaching Hospital (RBTH) and put under the care of renal specialist Dr Solomon. He explained that one of my kidneys was smaller than the other and my combined kidney function was quite low; around 50 to 60 per cent. This came as a real shock. After further tests, I was diagnosed with Reflex Nephrology. In simple terms, the urine flows back and damages the kidneys. I was totally unaware I had this condition which Dr Solomon described as ‘a silent killer’. For the next few years, I was treated with many different medications, at one point taking 25 different tablets a day. Unfortunately my kidney function didn’t improve, plummeting to 12 per cent. At 8 per cent kidney function I was put on peritoneal dialysis. Thankfully I could receive this treatment at home, which enabled me to continue to look after my son, who was three at the time. It was a very difficult time for me and my family.When you are on dialysis for eight hours a day, seven days a week, traveling and holidays become problematic as the machine has to travel too. I had no energy, very little appetite and couldn’t sleep properly. As the condition deteriorated further I lost the ability to support my family. I couldn’t look after my son properly, clean or cook. It was a very low point when I could no longer bathe myself. The time came when my name was added to the NHS Organ Donor waiting list. Both my parents and my husband are diabetic so were unable to donate a kidney. I knew I had a long wait ahead. The average waiting time for a kidney was two to three years. I was facing five to seven years due to the shortage of donors from black and minority ethnic communities. I felt dejected and thought I wouldn’t get a transplant. After only 11 months on dialysis, at 5 o’clock in the morning, I received the call I had been longing for. There was a kidney available.
If it is okay to accept a kidney, why is it not okay to give one?
I have regular check-ups at RBTH and the care I receive is fantastic. My new kidney has given me my life back and I have the energy to enjoy being a mum. My son Awais, who is now seven, says: ‘I have got my mummy back!’ Organ donation has made such a huge difference to my life. I may not have been able to share my story had it not been for the family of my donor. I have written to thank them for the wonderful life giving thing they have done. By sharing my story I want to give other people waiting for organ donations hope.
Critical Care Story
As an impor tant part of their patient’s long term rehabilitation, the Trust’s Critical Care Team set up a Follow-up Clinic to give patients the oppor tunity to discuss their critical care experience, ask any questions, assess their progress and, if required, arrange fur ther suppor t.
About two years ago, we started a Follow-Up Clinic for critical care patients who had been ventilated to invite them to return to hospital following discharge to discuss and get help for physical and/or psychological problems. Setting up the Clinic highlights the importance of providing good aftercare for patients following a critical illness. In line with recommendations by the National Institute for Health and Care Excellence (NICE) all patients admitted for longer than 96 hours are invited to the clinic. NICE recommends that the patient should be offered a meeting with a member of the healthcare team who is familiar with their critical care treatment and recovery. Clinics are held weekly and patients tell us they really value their appointment as, for many, it’s the first opportunity to talk about their experiences. It’s important to remember that when patients leave Critical Care to continue their recovery on another ward, it’s often just the start of a prolonged period of rehabilitation. Some patients visit the clinic to know more about what actually happened to them while they were in critical care, as many don’t recollect their stay. In addition, staff can discuss with the patient what to expect during their long term rehabilitation. A number of patients will have memories of bizarre dreams or hallucinations which is common for patients who have been in intensive care. Some patients continue to experience these dreams after being discharged home.
There are a number of reasons why these dreams can occur such as medication given or disease processes. Often they can hear what is going on around them, they can feel the treatment and care being provided to them and can partially see things in their line of vision as they regain consciousness. It is important for patients to be able to discuss these episodes and make some sense of their experiences. At the Follow-Up Clinic, these issues can be discussed in details in a comfortable environment. Patients also get the opportunity to re-visit the Critical Care Unit should they wish to do so. Family and friends are great comfort but often a patient doesn’t have someone to answer the questions they have, such as why has my diet changed, why can’t I walk like I did before, or why am I having nightmares? Putting their illness into context can be difficult. They want answers but families and carers who have been told to expect the worse often want to wrap their loved one in cotton wool when they get home. Dealing with the psychological trauma is sometimes seen as being secondary to recovering from the physical injuries. Patients need–and want - an explanation. The human brain is a wonderful thing which tries to make sense of everything it encounters. But when you are sedated, there’s no one to explain, to share the experience and make sense of what’s happening in your subconscious mind. This is why Clinic patients are actively encouraged to return to the Critical Care Unit to speak with the nurses, doctors and physiotherapists who participated in their care. In truth, they’re relieved to know what they are experiencing has happened to many others and is neither unique, nor unexpected.
Critical Care Unit Junior Sister Cath Clayton
Angela’s consultant Dr Alex Green
Coming to terms with a sudden, chronic illness and overcoming the many challenges it presents is made easier when NHS staff are “friendly, warm and professional”
In September 2017 I started with what I thought were severe indigestion attacks. I would feel pain in my upper torso, under my rib cage, which would travel around into my back. The attacks happened in the late afternoon/ early evening and could last for a few hours or all night. As a Crohn’s patient I am under the ongoing care of the Gastroenterologist Dr Green and the Irritable Bowel Disease (IBD) nurses, Jeanette and Teresa. I can’t commend the IBD nurses highly enough. Having Crohn’s can be frightening. Being able to speak to someone who is qualified and highly experienced in my situation has been of enormous help. The IBD Nurses are accessible, friendly, accommodating and brilliantly reassuring. I talked with Teresa about what was happening and she advised me to see my GP for an initial examination and in the meantime she arranged tests. The following month I went for an Ultrasound Scan. Jeanette rang me with the results - I had gall stones. I was referred and saw Mr Mackay, Consultant General Surgeon who told me I would need my Gall Bladder removing. I arrived at the Surgical Admissions and Daycase Unit (SADU) early in the morning and was greeted by the friendly receptionists. The waiting area was already busy and I didn’t have to wait long before a Nurse called my name. I was impressed with the care shown to me by the health care professionals. The Unit treats large numbers of patient’s day in, day out and to some extent I was prepared for that. My experience was of being treated as an individual and with kindness Every member of staff showed great compassions. Collectively and individually, they reassured me, giving me confidence in the individuals themselves and the hospital as a whole.
The next thing I knew I was awake in the Recovery Bay with a designated Nurse sat beside me asking how I felt and monitoring my progress. She explained that Mr Mackay was able to complete the procedure via keyhole surgery, things had gone smoothly and that, all being well, I’d be able to go home later that day and would not need to stay in hospital overnight. Good people skills make all the difference Four people in particular left a lasting impression. They took time with me and I felt they were invested in me as a person. I am grateful for their professionalism, humanity, kindness and down to earth attitude. The Nurse who admitted me was friendly and warm. He talked me through what was going to happen and got me ready with respect and good humour. The Anaesthetist met with me prior to my operation. He was friendly and professional. He went through what was going to happen, but was honest about what could happen if they had to convert to an open procedure. The Recovery Nurse was very caring, diligent and professional and never left my side.When I was a little wobbly after coming round, she quickly got blankets to warm me up, reassured me and kept checking me until I recovered. The Consultant Mr Mackay was incredibly thorough during my initial consultation. He was respectful, polite, easy to talk to but very professional and straightforward. On the day of my operation, he stopped to chat in the waiting area and reassured me about the operation.
Builder Steve Bradbury was delighted to avoid the need for radiotherapy and chemotherapy after having a cancerous tumour removed from his throat by robotic surgery at the Royal BlackburnTeaching Hospital
The 66-year-old grandfather, who lives in the village of Weir near Bacup, made such a rapid recovery that he was back at work within weeks. I feel highly privileged to be one of the first patients to undergo robotic surgery at the Royal Blackburn Teaching Hospital, currently the only hospital in the North West carrying out head and neck surgery robotically. I was on holiday in Tenerife with my wife Jean, everything was fine and I hadn’t noticed anything unusual. But about two weeks after returning home, I could see a lump in my neck. It wasn’t very big and it didn’t hurt, so I just thought it was a swollen gland. I left it a couple more weeks and then went to see my GP. He also thought it was probably only a swollen gland but told me to get it checked out just in case. I was referred to RBTH where a needle biopsy confirmed it was cancer and I underwent a CT scan, PET scan and MRI scan, as well as X-rays. Initially, medics told me they might be able to get rid of the cancer with radiotherapy, but then discovered it was possible for the tumour to be removed by the hospital’s robot. That’s when I met Miss Naseem Ghazali, an oral and maxillofacial surgeon who is pioneering the use of the robot in head and neck surgery. Before the robot, in order to access these areas, you would have needed to do radical surgery on the face to split the lip and jaw.With the robot, you don’t need to do this. One of the advantages in doing cases like mine robotically is that the robot allows the surgeon to carry out minimal access surgery in the mouth, the back of the throat, and in the head and neck area. It means patients like me have a better experience of surgery.We have a quicker recovery, our speech and swallowing functions will be better and our stay in hospital will be shorter. Mine was a two-part operation; first to remove my lymph nodes and after recovering from this, I had to go in immediately and have the tumour removed with robotic surgery.
The procedure took just 25 minutes and medics came all the way from Germany to see it done. The robot is huge with about eight arms and Miss Ghazali sat in a corner of the room controlling it. I had the tumour and one of my tonsils removed by the robot and everything was a success. A few days later, after looking at the scans, Miss Ghazali said they just wanted to go back in with the robot to take off some of the scar tissue.With the robot, you can go back in after it has healed, but with chemotherapy and radiotherapy, surrounding tissue is damaged. The robot is absolutely marvellous as not only does it do the surgery, it stitches you back up as well. Without the robot, they would have had to split my bottom lip to my chin then cut into my jaw to open it up like a book and then split my tongue as the tumour was in such an awkward position. Not only was I spared this, but because they managed to remove the tumour entirely, I did not need radiotherapy or chemotherapy. The only medication I needed was iron medicine and paracetamol! I was confident in Miss Ghazali and her team right from the start and the robot was absolutely fantastic in what it did for me. Miss Ghazali is brilliant, very dedicated and sensitive. She even comes in on her days off and works late to make sure everyone she has operated on is okay. I feel really privileged to have had this surgery robotically as it meant my recovery was very quick. I am back to work as normal doing a very physical job and living a full life and it is all down to that robot. I cannot thank Miss Ghazali and the staff at East Lancashire Hospitals enough for what they did for me. They are all amazing.
Tony’s Speech and Language Therapist Rhiannon Evans
After being diagnosed with the progressive muscle wasting condition Motor Neurone Disease (MND) in 2016, grandad Tony Plant reveals how he has “banked” his voice so he can still communicate in a recognisable way with his family after he loses it.
My ‘banked‘ voice is used to create a computer generated voice that sounds just like me. So when my voice goes, as long as I have use of my hand, I’ll be able to type and use my banked voice to speak. The function I will miss most is my voice. Communication is everything. I know I will eventually end up in a nasty place, but if I can still communicate things will be more bearable. My MND has now progressed and put me in a wheelchair. However, I remain positive and won’t allow the condition to stand in the way of anything I want to do. I’ve some bad moments, but between Janet and myself we won’t let it defeat us. The important thing for me is that voice banking will make a huge difference when my voice has gone and I can’t get it back. I will still be able to talk to our daughters Claire and Lucy and three grandchildren, and they will recognise my voice as grandad’s voice and not just a robotic or stranger’s voice. Since I became the first person in East Lancashire to successfully voice-bank, a few other people have successfully banked theirs. I’m determined to do all I can to raise awareness and encourage others to do the same. Being able to still use your own voice when the time comes that you lose the ability of speech gives a personal touch that you don’t get with a synthetic voice. It is comforting for family members to hold on to something so personal.
I remember first experiencing a problem with speech about four years ago but did not realise it was anything serious. People who used to come into the shop have since told me that occasionally I slurred my words and they thought I’d had a drink. I was a little aware of it but thought I was just talking too fast and didn’t know what it was. Just over three years ago, I retired and my wife Janet and I moved to the village of Bolton-by-Bowland. The plan was to spend our retirement travelling and fly fishing. That plan was put on hold when I accidentally fell from a ladder and broke my spine. I recovered from the injuries but noticed that I was starting to trip a lot and realised I couldn’t do things like walk and blowmy nose or sneeze at the same time. I knowmen can’t multi-task but I thought I should be able to do simple things at least! I went to see my GP who picked up on the slurred speech and thought I might have suffered a minor stroke. I then had 18 months of tests. Motor Neurone Disease is fairly rare so they tend to look at other diseases before they even consider it. However, Janet and I strongly suspected about six months before the diagnosis that I had MND; all the symptoms seemed to fit. Despite our suspicions, the diagnosis still came as a huge shock.We were told the worst case scenario was that most people only live for three to five years after diagnosis. MND is different in everybody but ultimately everything shuts down apart from your brain and most people eventually lose their voice. With that thought in my mind and after referral to Burnley General Hospital for speech therapy, I asked about voice banking. My therapist Rhiannon Evans was very supportive. She told me that no one in the Ribble Valley had done it yet. It was a red rag to a bull and made me determined to do it! Voice banking allows me to record a set list of phrases using my own voice. This is then converted to create my personal synthetic voice. It is amazing and very clever how it works.
Raising a child with complex long-term conditions is not easy. One mum tells of how the care and support provided by the Children’s Ward has taken the worry out of the future.
My daughter had a challenging start to life. At birth she was diagnosed with a cleft palate and had difficulties feeding. After genetic testing, Emily-Grace was diagnosed with DiGeorge syndrome. The condition is present from birth and can lead to a range of lifelong problems, including heart defects and learning difficulties. It is caused by a problem with a person’s genes called 22q11 deletion. Due to the feeding problems, Emily-Grace was also troubled with severe reflux, which developed into Bronchiectasis. This is another long-term condition which makes the lungs more vulnerable to infection. Several months after cleft palate surgery at Manchester Children’s Hospital, Emily-Grace was admitted a number of times to Royal Blackburn Teaching Hospital Children’s Ward due to continued breathing issues. It was quite a scary time, but the consultant was fantastic. She talked us through everything that was going on, and explained why Emily-Grace had to go into a cubicle on her own to prevent her becoming more poorly. The staff were wonderful. They were always so welcoming and understanding. Being the parent of a sick child is tough.You just want someone who is there for you, and the nursing and play staff were. They would seek us out to talk to us, reassure us and, importantly, they were a shoulder for us to cry on. I found it hard to cope with at first. I had a full time job while caring for my very sick child. It all became too much. Something had to give, and it was never going to be my daughter. So, the decision was made for me to give up work.
At four years old, my daughter does not understand what it is she is going through. She is such a confident and happy little girl; nothing stands in her way. Even when she has to go into the hospital for medical procedures, she takes it all in her stride. The hospital team are absolutely brilliant with her, which makes it much easier for everyone. She does have development delays due to DiGeorge Syndrome, but though this I see her developing her own little personality. For the last five years we have been visiting the children’s ward and observation unit on a regular basis. The care we’ve received has been outstanding. My daughter feels safe and happy in what could be seen as a scary and unknown environment.We are overjoyed with the amount of care and attention we receive as a family, particularly during the very difficult times. Everybody always goes above and beyond. The level and amount of involvement we have in our daughter’s care is amazing. There is a constant stream of information about what is happening from everyone involved in her care. It is incredibly important to us; it makes us feel part of the team. I was a qualified nursery practitioner for eight years. Now I am a student nurse, studying on the access to nursing course. Not only was I inspired by the nurses, who have cared for Emily-Grace, they encouraged me to go for it. Children’s nursing is the only choice for me; it has to be. I had always planned to do it but with everything we have been through, now is the perfect time. From the bottom of our hearts we want to thank the Trust for everything they do - and will continue to do - for our daughter.We have many more years of care to come, of which I have no concerns.
Katrina Krakowska, 32, lives in Colne with her two daughters Vanessa, eight and baby Kaya who was born on Valentine’s Day this year
Kaya was induced at 35 weeks and born at Burnley General Teaching Hospital on February 14, weighing 5lbs 10oz. She was given immunoglobulin to help her recover, had several blood transfusions and was given light therapy. She now has regular blood tests to monitor her progress. I feel confident and secure about Kaya’s future thanks to the excellent care Vanessa received.
My blood type conflicted with my babies’ and I have nothing but praise for medical staff at East Lancashire Hospitals NHS Trust who saved both my children. They had to have urgent care and treatment at the Neonatal Intensive Care Unit (NICU) as the blood conflict caused my blood cells to develop antibodies that attacked the babies’ blood cells causing jaundice. Vanessa was nursed back to health from the life threatening condition after developing serious jaundice. She was even given an exchange transfusion, a procedure where all the blood is slowly removed and replaced with fresh donor blood. Vanessa is now a healthy eight-year-old but when I had baby Kaya, I faced the same blood conflict problem. Of course, I had every faith in the team at East Lancashire Hospitals and knew Kaya would be in the best of hands. I was hugely reassured when I recognised the doctor who had cared for Vanessa. Both my daughters have been in NICU and cared for by Dr Naharmi Soni. He is my biggest hero. A few hours after Vanessa was born, I realised her skin was changing to orange, then brown. She looked like she had a dark tan and I remember thinking: ‘something is definitely wrong.’ I asked the midwife to have a look at her and she realised Vanessa had very severe jaundice and took her for light therapy and took blood samples. Phototherapy is used to reduce high bilirubin levels that cause jaundice in a newborn. The baby is exposed to a type of fluorescent light that is absorbed by their skin. During this process, the bilirubin in the baby’s body is changed into another form that can be more easily excreted. A baby with jaundice may need to stay under a phototherapy light for several days. Dr Soni took us to a private room and explained everything really well. We were warned Vanessa had a 50/50 chance. Luckily, everything was fine. Vanessa had a full blood exchange transfusion. She spent about eight days after the transfusion in NICU and remained on light therapy for about a week. Everything went well and she recovered wonderfully.
When I went to NICU at Burnley with Kaya, and saw Dr Soni, I started crying as I felt so happy.
I told him he is my biggest hero as I appreciate everything he has done so much. Dr Soni deals with babies and parents in a wonderful manner. He explains things very well and is very caring and is genuine and shows real emotion. The nurses are like mothers to the children and do everything they can to make them better. They are not just doing a job but truly care. To me, they are all like angels. Dr Soni said “Medical advances in the last eight years and better lights meant Kaya needed lots of lights to control the jaundice and blood transfusions rather than an exchange transfusion which is riskier. Once we slowed down the rate of destruction of red cells, then Kaya was on the road to recovery. It was pleasing to have mum recognise me after eight years and very rewarding to hear howmuch trust and faith Katrina has in me. It makes the job so worthwhile, satisfying and rewarding.”
When Darren Niman experienced a strange sensation in his left eye, his optometrist referred him immediately to Burnley General Teaching Hospital for surgery which saved his eyesight
The main thing I remember was sensing, even noticing, the outline of one or more of the instruments used to perform the procedure to fuse together and re-attached the retina. There were other sounds and voices heard, all calm and relaxed. I was off work for three weeks and eventually returned part-time, going back to full time after another month. Driving was problematic and there were some very challenging and frightening times when the image in the left eye was badly distorted. This was also a time when my emotions were running high. It was frustrating not being able to see properly, and I felt a little dissociated from the rest of society. I began to realise what was and what wasn’t important: who my friends were, who cared about me. Despite the vast plethora of emotions I went through, I’m delighted with the end result. While vision will never be absolutely 100 percent, as it was before the surgery, it has most cer tainly exceeded my best expectations. I am sincerely thankful and appreciative of the entire medical and support staff who made it possible for me to see again. Consultants, Anaesthetists, Doctors, Nurses, Admin, Porters, the lot - without you it would not have happened. You are a credit to the country. The care you provided was excellent, as was the miraculous feat of surgery!
Every year, more than 250 people are rushed to the Ophthalmology Department at Burnley General Teaching Hospital for emergency surgery. Musician Darren never thought he would be counted among them. In May 2017, I noticed a strange sensation in my left eye. There was something quite dark in the periphery which was deep red in colour, and a number of specks floating around the central part of my vision. Having had a previous cataract operation I was worried it may be something as serious as a detached retina. Fortunately I had a scheduled sight test the next day. After examining my eye the Optometrist immediately referred me Ward 6 at Burnley Hospital with a suspected detached retina. No later than ten minutes after leaving the opticians, I received a telephone call asking me to come in the following day for initial assessment. The Ophthalmology Department diagnosed a detached retina which had extended down to and beyond the macula, part of the retina responsible for central vision. I was considered a medical emergency and advised that if nothing was done, I could lose vision in my left eye. I returned to Burnley the following day for surgery. Nothing prepares you for a possible life-changing moment like this and there is nothing you can do about it except take it lying down, quite literally. I was examined thoroughly and advised the operation would be 70 to 80 percent successful. Although, there was also the possibility that the operation may result in making things worse, with a risk of losing the sight completely. Needless to say it was a shock, and I felt a little fearful. My thoughts turned to whether or not I would ever be able to work again, drive again or live a normal life again. There was no alternative, I must have the surgery.While waiting on the ward, there was nothing I could do except take a deep breath, hope and pray, and be thankful that I live in a country with the very best health service in the world! The effect of the sedative was noticeable and very welcome. Due to the intricate nature of the surgery it was important that I was relaxed and as comfortable as possible, which was achieved by the very friendly and patient nurse. She reassured me and held my hand throughout the whole procedure.
Special Thanks Continuing Compassionate Care features real people and tells their stories, in their own words of their experiences and treatment at East Lancashire Hospitals NHS Trust. On behalf of our Chairman, Chief Executive and the Board of East Lancashire Hospitals NHS Trust, I offer sincere thanks to them all for helping to make this publication possible.
Christine Hughes Director of Communications and Engagement
This publication is available in other formats and languages on request.
East Lancashire Hospitals NHS Trust Royal Blackburn Teaching Hospital Haslingden Road