Hospital Life


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Today I wanted to tell you about an event I attended. It was in support of  the  Learning Disability (LD)Week 2017. I was privileged to be invited to sit on a panel alongside Experts and parents to share our lived experiences in order to help health professionals appreciate the impact of the care they provide through our own eyes. It was a fantastic day at Great Ormond street Hospital London. The heat was less, allowing us to have an enjoyable session. It always feels great to come home to GOSH! Mencap– the voice of learning disability in the U.K. Supported us and it was a fantastic and empowering event to have been a part of. The need for LD nurses on the NHS cannot be over emphasised. We talked about the huge difference staff could make in transforming care for children and the families of children who walk through the hospital doors. We revealed how important it was to have someone who understand the needs of the children. Nurses in their role could also mediate on behalf of the children when their voices could not be heard as result of their Learning Disabilities. Learning disabilities limit the ability of sufferers to understand and learn. It made them appreciate things slowly but not impossibly. Parents talked about the impact of a “smile” from the staff. It helped foster the always values of the hospital. It made them feel more welcome and made an absolute difference to stressful outpatient appointments. Patient said they wished they could be acknowledged more and included when decisions about them were being made. Breaking down communication by using simpler language helps patients with learning disabilities feel included. Non-verbal does not mean that a child or young person cannot understand. Body language and tone of voice hold a strong an essential key to communicating with them. They can help non verbal children warm up! We also discussed about the difference a little patience and empathy can make in the lives of patients and their families.  It was nice to hear feedback from health professionals about the our challenges with dealing with children with learning disabilities. Notable among the feedback we received was how the “Patient passports” that provide more detailed and specific information were found to also fuel the anxiety of staff in delivering the care. Worrying about getting things wrong with these children compromised the confidence of some staff. It was reassuring for them to hear from parents how much it meant to see staff go above and beyond for their children despite their inner misgivings.  Parents were acknowledged as experts with their children by the Health Care Professionals but ultimately, the general consensus was for there to be a partnership between all parties with the child always at the centre of the decisions. This was in line with the GOSH  slogan The Child first and always. The event closed at 4pm and we all felt richer and more informed. Chapter 18 of the book “Through our eyes: what parents want for their children from health professionals” written by Jim Blair and Parents was the basis for our meeting. Jim Blair is a Consultant nurse in Learning disabilities and an Associate professor. Mary Busk, Hayley Goleniowska (Author of down side up), Simon Hawtrey-Woore, Sue Morris, Yvonne Newbold (Author of Special Parents Handbook) and Stephanie Nimmo were all contributors to the book and Experts by Parental Experience.  Photo Credit: Pixabay                 EVALUATION AND FEEDBACK FROM STAFF AFTER THE EVENT Through OUR eyes what people with learning disabilities and parents want from health professionals   The majority of staff were nurses or HCA’s others were doctors, play therapists or from facilities environment design department    How well do you feel the learning outcomes were met today? ‘Very well, much more informative than expected’ ‘The session fully met my expectations’ ‘I don’t know what the learning outcomes were’ ‘I think the session was very important. I feel I can take away new skills and knowledge and use them in my practice.’ ‘x4 Very well’ ‘Beyond expectations.’ ‘V good.’ ‘No outcomes given at start’ ‘Very well, met my learning outcomes.’ ‘ They were met well. A lot of discussion that prompted other topics to discuss.’ ‘The session has been very usful. It has provided me with the knowledge and the experts experiences was interesting.’ ‘A good start, foundation to find out more. Good patient / carer interaction., More.’ ‘Quite well, very out patient based, maybe some more ideas of facilitate nurses and teams on ward area.’ ‘A really interesting discussion and insightful to hear parent experiences.’ ‘I feel the outcome has been met and even several spots have been touched on. I belive understanding, acknowledging, confidence have been the key aspects.’   How will today’s session improve your practice? ‘To not be afraid and be more confident when dealing with patients with disabilities’ ‘I will consider the specific needs of the LD community in the design of departments’ ‘Might consider exploring idea of artist led training sessions for clinical staff around LD’ ‘it helped me to understand the concerns the people with ld have’ ‘By talking what the parent and patient needs from listening. Listening to listen not listening to speak and by working in partnership with them’ ‘x2 Greatly.’ ‘Increased awareness of specific accommodations that can be made for people with learning disabilities.’ ‘it will help me understand the struggle, stigma and fight the patient and families may have been through and how to approach and respond to them. It also has taught me not to be afraid or fear them but to smile and be confident when dealing with a child who has a learning disabilities.’ ‘See, say hello and smile.’ ‘It will make me more aware of how I communicate with patients an dtheir family. As well as how I offer care.’ ‘By treating all patients with LD the same way but ensuring communicating in the way they need to be […]

Learning Disability Week 2017 at Great Ormond Street Hospital


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My son Otito was born with a metabolic condition called Propionic Acidaemia. This condition sadly compromised his body’s ability to breakdown proteins. The implication of this was that he suffered with lots of metabolic decompensations and his body easily built up toxins called Ammonia in his blood. As a result of this degenerative condition, he was developmentally behind for his age.  His social and communication skills where severely impaired and he mostly existed in a world of his own. As a result, he was subsequently diagnosed with severe autism and learning disabilities. It was a huge shock to me as his mother to accept that my son would be different from other children. I took steps to overcome this feeling by getting as much information as I could once the diagnosis was made. His consultant at the time was very kind and eager to explain the condition to me. Before long, I understood most of the implications of the condition for my child. I also learnt about ways to spot the early signs of a metabolic crisis. Sadly, detecting the early signs did not prevent the metabolic crises that he characteristically suffered. The rate at which they occurred meant that he became a very unstable child. He became frequently hospitalised to keep him safe. Unfortunately, that also meant that he spent more time in hospital than we all would have hoped. By his 3rd  year of life, he suffered  a further complication of his condition with chronic pancreatitis and became hospitalised for one year to keep him safe. During his admission, we encountered many Health Care Professionals (HCPs). These were made up of medical staff functioning in different capacities and across various disciplines within the hospital.. While they all had the sole purpose of delivering excellent healthcare to our son, it was hard to get them to understand the care he needed because his level of development impaired his ability to express these needs appropriately. As his mother, I was also his advocate. I sprang to his defence like a mother hen every time his needs were missed. It was difficult to get the staff to listen. His inability to communicate left him non-verbal. He was also unable to express his emotions appropriately. For example, his expression of pain was not by crying or screaming as characteristically normal for most children. Instead, he became more quiet, withdrawn, less mobile and inactive. This pain response was mainly interpreted as being calm but not in pain. He was also very sensitive to being touched or held. During pain episodes, this touch sensitivity always became worse. His only position of comfort was always one where he could lie curled in a foetal position. He tended to pull in his limbs and stayed in the corner of the bed grinding his teeth. It was heart breaking to see him suffer at a time when he was closest to care. I cried for him every time he pulled away. I cried for the pain he could not express. I wished more than ever that he could do the same. I could not even communicate that to him. It was a helpless situation to be in as a mother. I could not pick him up to cuddle him or comfort him either as he could not tolerate such interactions as a result of being autistic. When the pain team got involved, I was a bit hopeful. However, his scores were low on their charts. The pain charts recorded higher scores for pain based on normal responses. For example screaming, being irritable and displaying active movements especially kicking to show pain was ranked highly. Incidentally, the pain endured by most pancreatitis sufferers I had met where always likened to excruciating labour pains experienced during childbirth. It was no wonder that the HCPs only disagreed with me every time I suggested that he was having yet another bout of the pancreatitis pain cycle. They could not justify the need to give the level of pain relief I was requesting since the pain scores they charted did not support my claim However, given his status as a severely autistic child with learning disabilities it was really not far-fetched. Their lack of experience with this type of autism that could lead to such pain responses in children meant that my son was unintentionally left to suffer. I knew I had to seek help for my son but had no idea how. As time went by my son became very withdrawn. While what the health professionals saw was more of a quiet boy, what I saw was less of my child and more of a chronic patient. To them his quietness was only a confirmation that he was after all unwell. We kept hitting brick walls at every corner trying to get him the help he needed in those first few months when he was admitted. It was while out on a walk along the hospital corridor one day that I made a discovery that changed the course of my son’s care for the better. After one of my routine arguments about the need to administer more pain relief for my son, I needed a change of scenery. That was when I accidentally stumbled across a leaflet hanging casually from a rack on the wall. It revealed the information about the existence of an expert in the hospital called Jim Blair who specialised in supporting families who had children with learning disabilities (LD). He happened to be a consultant and lead nurse in this area. Surprisingly and in the most unceremonious fashion, help finally arrived when I least expected it! Jim was very helpful and approachable. I was able to discuss my concerns easily with him. It was relieving to find someone-a health professional who finally understood my son’s plight. He simply got it! The pain responses that I described to him were anything but alien. In fact he said it was quite common with children who had the level of […]

Hospital life : Getting health care right in hospitals for people with complex health needs and intellectual disability



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I have now stayed over one year in the hospital with Fred and a whole lot has happened since then. There have been tears, laughter, sadness but most importantly, hope. Just “good old hope” about positive outcomes or at least finding the positive sides to our outcomes whatever they may be. One very interesting should I say side effect of the whole hospital experience has been that I have become more “hospitaley” than I would like to admit. I can now exist in chaos; beeping machines and screaming toddlers make up the sound track of my life. I have turned into an art waiting an art. Somehow I have become less fussed about dates and postponements, they always come in the end no matter how far they are thrown. One less part is that I can now eat bad tasteless food. I can eat fast foods, bad food, good food and you would never tell from my face. My taste buds are as bad as my ears to less than desirable foods and sounds. I have also conveniently forgotten how to do house chores, live at home and be normal. Our life has been quite split into hospital and domestic. Karl handles the domestic side expertly ( and for that I feel blessed and remain thankful) while I handle the hospital side. It has been working for us. Fantastically, I must add because as “Adam Smith” said – division of labour leads to specialisation. Karl and I have become gurus in our chosen fields. Sadly the downside is that I have now honestly forgotten how to handle the domestic side. One of the mums on the ward calls it “being institutionalised”. I can still cook (that will take more than a year to get de-skilled) and that but when I say I have forgotten the domestic side, I mean, I now experience a feeling of apprehension when it is my turn to stay at home with Mark. I find I secretly can’t wait to leave. No one notices this but deep down, i know my brain will rather do what it has now become used to – cleaning beds, clearing up vomits , chanting nursery rhymes, making sure Fred is fine. It is stressful but it has become my new normal. I can’t seem to find where things are kept when I am at home. I can’t get over how much Mark has grown. He sees through our white lies (which by the way are meant to be my parent secret tools). One year is a long time in a child’s developmental clock and it seems like a shame to feel a sense of loss. There is always time to do something. Many parents with sick children especially those who have long admissions can relate with this. There are some ways to try to overcome this hurdle: Communicate: If you feel left out of the lives and routines of the family, it may be time to have this discussion with your partner or one who shares the care of your family with you. Keeping your frustrations bottled up may not allow you find solutions. It may fuel your helplessness. For those without partners or who are single parents, it may be a good time to speak with HCPs or social services. They are there to provide support and signpost you to other services that can assist you. Swapping: It may be a good idea to consider swapping. By swapping I mean allowing a partner, family member or person of trust swap places with you for a few hours or days at a time depending on what is available. No matter how little the time off is, it will still be helpful. Some local authorities provide only a few clustered hours of care depending on the family needs and what is available. Do not decline help except you are sure that it is not really suitable. My rule of thumb is to accept anything I get to enable me consider my options before declining I find it is easier than declining and later realising it may be a good idea to avoid disappointment. Maximise the quality of time spent with the rest of the family as the time at your isposl may vary and be limited, it is not such a bad idea for you to plan the activities you intend spending with your other children or family members. Remember that if you only plan to do anything, you may end up doing nothing. Also, having a plan will endear positive sentimentality towards you. It will make other family members or children feel important and cared for. The siblings of sick children normally feel neglected. Little steps towards improving the quality of the time you share with them can help foster family unity which in turn can be stress relieving for the caregiver. Don’t feel guilty: As long as you have made adequate arrangements for the care of your sick child, there is no need to feel guilty about the time you take from caring for your them. Guilt is emotionally exhausting. It also robs you off the enjoyment of the short time you have to spend with the rest of your family. It can make you appear absent minded and unhappy to be with the family. The other siblings can pick up this from you and in some cases resent you for it especially when they can compare your mood and demeanour and find a sharp contrast between your behaviour with them and the sick child. You deserve a break. Spending time with the rest of the family is good and healthy for you. It can make you happy. Happiness impacts positively on your overall well-being as a person. When your well-being is improved, you can feel refreshed and rejuvenated, becoming the best carer you can be. Make time to rest: resting can help lighten your mood and leave you feeling less stressed. Time spent with the rest of the […]

Hospital Life- The past year