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Topics include: reasonable adjustments for people with learning difficulties and autism when they come into hospital hospital gowns and how it may make some people feel patient engagement online support groups.

The report states that the COVID-19 crisis shows how rapidly disinformation spreads. A poll revealed that nearly half (48%) of all British people had either seen or been sent "fake news" about COVID-19, online since the outbreak began. In addition, almost two in five (17%) said they did not know whether they had come across fake news, suggesting that the ability to identify and report the spread of misinformation is less than perfect. In this context, health education, on its own, is insufficient. We need to build health literacy (people's ability to understand health information), and work towards the goal of patient activation (enabling people to exert control over the determinants of health). The report makes a series of recommendations, including the introduction of a permanent "disinformation unit" to correct false information and help shape public health narratives. The authors conclude that "New technologies have created opportunities to reach wider audiences, but ... It is also clear that the NHS and health sector more broadly need to take a more proactive approach. As an extremely trusted source of health information, it is imperative the NHS stays ahead of the curve".

Between April 2008 to March 2017, procedure data from the UK NHS confirmed that 100,516 patients had a mid-urethral tape procedure, while only 1195 patients had a non-tape SUI procedure. Although the 2013 national guideline from The National Institute for Health and Care Excellence (NICE) recommended that tape and non-tape SUI procedures be offered equally, 84 mesh tape procedures were performed for every 1 non-tape procedure over the 10-year period. Hundreds of patients recently engaged in litigation on the basis of lack of informed consent, particularly in offering alternatives to the mesh tape option. Little is known, however, about how patients choose among different treatment options for SUI and there are no validated patient decision aids (PDAs) in this context. PDAs have been shown to increase patient knowledge, clarity about their own values and accuracy of risk perceptions regarding various management options. Women considering SUI surgery require up-to-date information on all common and available surgical procedures as well as support in their decision-making, tailored to their values and needs. Agur et al. on behalf of the NHS Ayrshire & Arran Continence Multidisciplinary Team designed and developed a novel SUI surgery patient decision aid (SUI-PDA) to help women in making a choice of treatment based on their own individual values. This study reports the development and validation of SUI-PDA as well as the initial evaluation of its usefulness in clinical practice for women considering SUI surgery.

Key findings Most questions on the theme of being treated in a respectful and dignified manner continued a trend of sustained improvement over the last 3-6 years. Results show communication between staff and patients before and after operations is improving. Patients continue to report positively when asked about the cleanliness of the hospital environment, the choice of food available to them and hydration. Confidence in doctors and nurses also remains high this year. However, this year’s results indicate that there are areas in need of improvement: Patients consistently reported less positive experiences for the themes of: communication at the point of discharge and consideration of the support they will need after leaving hospital. Results for information sharing in relation to medicines, including: explaining the purpose, being told about possible side effects and being given written or printed information all declined this year. The percentage of people experiencing shortages in nursing staff remains high. Certain groups of patients consistently reported poorer experiences of their time in hospital, including patients with dementia or Alzheimer’s, younger patients (aged 16 to 35) and patients who were admitted in an emergency.

Pain affects all of us on occasion, but thankfully can be controlled or abates over a short period of time. For some, pain is ongoing to the degree of becoming persistent and for many is it significant. An estimated 14 million people in the UK live with chronic pain. Pain therefore is a frequently presenting complaint across a wide range of health care settings. It presents to primary and community care and specialist (secondary) and specialised (tertiary). For most, their pain is treated, managed or resolved within the primary care and community setting. The pain management of those for whom this does not happen must be scaled up, which means referral to more specialised care. This referral should be timely; persistent pain does not go away but develops and accelerates over time through well recognised neurophysiological processes. The principle driving these standards is to have an acceptable level of care in pain management which is consistent, both geographically and from initial to escalating levels of care. These standards are multidisciplinary, that is to say they apply to all clinical professions to include nursing, physiotherapy, clinical psychology, occupational therapy and medicine. It is intended however that this work is not only a clinical guideline for those working to deliver pain management but that it is a reference and framework for those planning or negotiating pain services in the wider sense, particularly commissioners.

20200611 Safe medicines COVID.pdf

The outpatient appointment Attending an outpatient appointment, in my experience, is daunting at the best of times. First, there is the appointment date. Often you have had to wait an exceptionally long time for this appointment (providing the referral letter hasn’t been lost). The date and time are chosen by the Trust. There are some Trusts and specialities that will allow you to choose a time and place, but more often than not you are not able to choose and changing the date and time can prove tricky. There are many reasons for a patient not to turn up for an appointment. These reasons and how to mitigate them are looked at by Trusts. The 'Did not attend' (DNA) rate is looked at by Trusts. DNAs have an enormous impact on the healthcare system in terms of increasing both costs and waiting times. Trusts often want to reduce these to: reduce costs improve clinic or service efficiency enable more effective booking of slots reduce mismatch between demand and capacity increase productivity. Then there is getting there. Getting time off work or college, making childcare arrangements, getting transport… finding parking! Before patients even get to the appointment, they have often been up a while planning this trip. Imagine what this must be like for a patient with learning disabilities. This poses even more planning. What medication might we meed to take with us? Are there changing facilities for adults? Can we get access? Is there space to wait? Will anyone understand me? How long will we be there for? Do they have all my information? Services need to be designed with patients' needs at the forefront: the ability to change appointment dates, the location in where the appointment is held, parking facilities, length of appointment, type of appointment, is a virtual appointment or telephone appointment more appropriate? If you have a learning disability, you may have a family member or carer with you. If you have transitioned out of children’s services you will be seeing someone new, in a new environment. You may not have had the time to discuss the fine nuances to your care that is really important to you. You have now left the comfort bubble of paediatrics where you and your family had built up trust with the previous consultant and care team, and you are now having to build up new relationships. What is in place for you to feel comfortable? Has anyone asked what would help? The consultation Reasonable adjustments such as a double-length consultation is a great way of ensuring people with learning disabilities have enough time to process information and are given time to answer questions. Extra time is only one of many reasonable adjustments that can be made. An example... I would like to reflect on a recent time when I cared for a patient with autism and I didn’t have all the information to enable me to plan care for them at this particular time. This patient had spinal surgery and spent a very brief period on the intensive care unit. As part of my role as a critical care outreach nurse, I see patients who have been in the intensive care unit to check that they are doing well, that ongoing plans of care are in place and that they understand what has happened to them. I read that this patient had autism, but I had no other information. I was unaware of how the autism affected her, if she needed a carer, what she likes, dislikes, how to approach conversations or anything that was important to her. There is a health passport that can be used to aid exactly this information, this is filled out by the patient with their family or carer. Unfortunately, I could not locate the passport. I read the medical notes and went in armed with my usual questions and proforma that we use for all patients. Usual visits like this last from around 10 minutes (for a quick check) to an hour if they are a complex long stay. With the operation that this patient had, I was expecting to be with the patient for around 20 minutes. After introducing myself to the patient, it was clear that the proforma I was going to use wasn’t going to work. Tick boxes and quick fire questions were not the right way of going about this consultation. This patient was scared. More scared than a patient without autism. Their usual routine was gone, they were unable to ask as many questions as they normally would as the nurses and doctors were busy, their surroundings were different, the food was different, new medications, new faces everyday – there was no consistency. The ward round had just happened, the patient had a good plan in place and was due to go home the following day. Normally, this would mean that my visit would be a quick one as the clinical needs of the patient are less complex. This visit took me 90 minutes. Not only did I not have the care passport to hand, due to the coronavirus pandemic I had a face mask on. I felt completely ill-equipped for this consultation. I knew I was missing vital pieces of information which would help me communicate with this patent more effectively. So much of our communication is from facial expressions. A smile for reassurance makes a huge difference. I now have yet another barrier to overcome to communicate with my patient in a way that they can understand and feel comfortable. This particular patient asked many questions. This I had not factored into my day. I have a list of 12 patients to see, in between answering calls from staff on wards who have unwell patients for me to review. It’s too late to abandon the consultation or leave it for a less busy time. I’m at the patient’s bedside and I’m already committed to giving this patient my full attention. After we spent around 20 minutes discussing why I had to wear a mask, what the mask was made of, how many I had to wear in a day, why patients were not wearing masks, we then got onto the subject of food. Where the food is made, how does it get here, who heats it up? Then it came to the other patients in the bay. She knew all of them by name and proceeded to tell me the goings on that happened during the night. I’m clearly not going to get my proforma completed here. This is because my proforma is not important to my patient. "What matters to you?" During my Darzi Fellowship I had the opportunity to visit the Royal Free. Here I met an amazing physiotherapist called Karen Turner. She introduced me to asking the question ‘What matters to you?’ Simple – but so very effective and empowering for your patient to be asked this. The food, my mask and the people around her were of greatest importance to my patient at this time – not what she thought of her stay or if she wanted me to go through the intensive care unit steps booklet; these were important for me to know, these were questions that gave the Trust insight of what is important to them. It dawned on me that we had designed our follow-up service to suit us and not involved families or the patient. I feel a quality improvement project coming on! Reasonable adjustments take planning, as clinicians we need to know about them. We need to factor them into our work. The NHS has just enough capacity to run if all patients followed the NHS pathways, if all patients grasped everything and followed all instructions, took their medications on time, turned up for their appointments – there wouldn’t be a problem. It takes me back to the clip from the BBC programme ‘Yes Minister’ of the fully functioning hospital with no patients and that services run very well without patients! Currently systems within the NHS are designed around the building, the staff within it and the targets that are set out by NHS England and the Department of Health and Social Care. If we started designing care and access around patient need and ask them what would make it easier – what helps? what matters to you? – what would healthcare look like? During this time of uncertainty and change, I see exciting opportunities to take stock and see what’s working and what isn’t – and lets start involving patients at every stage. Call to action What are you doing to ensure reasonable adjustments are made for people with learning disabilities where you work? What more needs to be done to ensure that people with learning disabilities feel part of the conversation and play an active role in their care? Are you a patient, carer or relative? What has your experience been like? Have you any experiences in designing services with patients? Perhaps you are a patient and have been a part of the process. Add your comments below, start a conversation in the Community area or contact us. We'd love to hear your thoughts and experiences.

Michael was diagnosed with Crohn's disease at the age of 12 and had his first operation at 14. He died last weekend and was the same age as me. Our daughters were in the same year at secondary school together, and we got to know each other that way at first and then through our mutual interest in health care. When he awoke from an operation to discover he had a stoma bag, he didn't wallow. He bought items online to make it a 'smart' stoma bag to be able to get an alert when it was near full and provide useful data to his medical consultants. This was the type of person he was. Whenever I needed help in anything and asked him, he would unconditionally do everything he could to help, and never failed to deliver – I wish I had been able to do more for him. When he realised that thousands of other patients would be able to benefit from his smart ostomy bag, he tried to get innovation funding to develop and manufacture it at scale for the NHS. He tried over 40 times and received over 40 rejections. People on the other side of the Atlantic were able to see what the NHS couldn't, and 11 Health (he was the 11th person to have a bowel transplant) moved to the West Coast of the USA and grew quickly. He was 'patient in residence' at Stanford Medical school, one of the first such roles in the world. With the clinicians at Stanford, they created the Everyone Included programme, a joint initiative between clinicians and patients which as he described it is "a framework for healthcare innovation, implementation and transformation based on principles of mutual respect and inclusivity". He mentioned this and his journey as a patient in his Ted X talk in 2018. In that talk, he calls for a Chief Patient Officer to work with healthcare execs in co-designing new services for patients or improving existing services. Involving patients in this sort of work is a key foundation for safer healthcare systems. This is not a non-exec role, it is not an arms length committee tick box role. It is a role that can have a profound effect on the ways that services are delivered to patients. It is hugely important and no UK care providers has anyone like this on their exec teams. If you know different, please comment on it below. I think it is about time that a movement to appoint Chief Patient Officers into Trusts was started, don't you? See here for a detailed interview with Michael in 2018: https://www.highland-marketing.com/interviews/hm-interview-michael-seres/