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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.

The guide is also attached for download.

So, what does it feel like working in chronically depleted staffing levels? "We are down three nurses today" – this is what I usually hear when I turn up for a shift. It has become the norm. We work below our template, usually daily, so much so that when we are fully staffed, we are expected to work on other wards that are ‘three nurses down’. Not an uncommon occurrence to hear at handover on a busy 50-bedded medical ward. No one seems to bat an eyelid; you may see people sink into their seat, roll their eyes or sigh, but this is work as usual. ‘Three nurses down’ has been the norm for months here, staff here have adapted to taking up the slack. Instead of taking a bay of six patients, the side rooms are added on making the ratio 1:9 or sometimes 1:10, especially at night. This splitting up the workload has become common practice on many wards. "That was a good shift" – no one died when they were not supposed to, I gave the medications, I documented care that we gave, I filled out all the paperwork that I am supposed to, I completed the safety checklists. Sounds a good shift? Thinking of Erik Hollnagel’s ‘work as done, work as imagined’ (Wears, Hollnagel & Braithwaite, 2015) – this shift on paper looks as if it was a ‘good shift’ but in fact: Medications were given late; some were not given at all as the pharmacy order went out late because we had a patient that fell. Care that was given was documented – most of the personal care is undertaken by the healthcare assistants (HCA) now and verbally handed over during the day – bowel movements, mobility, hygiene, mouth care, nutrition and hydration. As a nurse, I should be involved in these important aspects of my patients’ care, but I am on the phone sorting out Bed 3’s discharge home, calling the bank office to cover sickness, attending to a complaint by a relative. It’s being attended to by the HCA – so it's sorted? I have documented, probably over documented which has made me late home. I’m fearful of being reprimanded for the fall my patient had earlier on. This will be investigated and they will find out using my documentation what happened. The safety checklists have been completed for all my patients; comfort rounds, mouth care, falls proforma, bed rails assessment, nutritional score, cannular care plan, catheter care plan, delirium score, swallow test, capacity test, pre op assessments, pre op checklists, safe ward round checklist, NEWS charting, fluid balance charting and stool charting… the list is endless. Management have made things easier with the checklist ‘if it’s not written down it didn’t happen’ so now we can ‘tick’ against the check list rather than writing copious notes. However, I cut corners to enable me to complete all my tasks, some ticks are just ‘ticks’ when no work has been completed. No one would know this shift would they? What looks as if it has been a ‘good shift’ for the nurse, has often been the opposite for the patients and their family. There is a large body of research showing that low nurse staffing levels are associated with a range of adverse outcomes, notably mortality (Griffiths et al, 2018; Recio-Saucedo et al, 2018). What is the safest level of staff to care for patients? Safe staffing levels have been a long-standing mission of the Nursing and Midwifery Council (NMC)/Royal College of Nursing (RCN) in recent years. In the UK at present, nurse staffing levels are set locally by individual health providers. The Department of Health and professional organisations such as the RCN have recommended staffing levels for some care settings but there is currently no compliance regime or compulsion for providers to follow these when planning services (Royal College of Nursing 2019). I was surprised to find that there are no current guidelines on safe staffing within our healthcare system. It left me wondering… is patient safety a priority within our healthcare system? It seems not. While the debate and fight continues for safe staffing levels, healthcare staff continue to nurse patients without knowing what is and isn’t safe. Not only are the patients at risk and the quality of care given, but the registration of that nurse is also at risk. What impact does low staffing have on patients and families? ‘What matters to them’ does not get addressed. I shall never forget the time a relative asked me to get a fresh sheet for their elderly mother as there was a small spillage of soup on it. I said yes, but soon forgot. In the throes of medication and ward rounds, being called to the phone for various reasons, answering call buzzers, writing my documentation, making sure Doris doesn't climb out of bed again, escorting patients to and from the CT scanner, transferring patients to other wards – I forgot. My elderly patients’ daughter was annoyed, I remember she kept asking and I kept saying "in a minute", this made matters worse. She got annoyed, so that I ended up avoiding her altogether. How long does it take to give her the sheet? Five minutes tops, so why not get the sheet? MY priority was the tasks for the whole ward, tasks that are measured and audited on how well the ward performs by the Trust; filling out the observations correctly, adhering to the escalation policy, completing the 20 page safety booklet, completing the admission paperwork, ensuring everyone had their medication on time, making sure no one fell – changing a sheet with a small spot of soup on it was not on my priority list. It was a priority for my patients’ family. My patient was elderly, frail and probably wouldn’t get out of hospital alive this time. Her daughter was the only family she had left. It’s no wonder families feel that they are not listened to, are invisible, are getting in the way and not valued. These feelings do not encourage a healthy relationship between patients/families and healthcare workers. Studies have shown that involving patients and families in care is vital to ensure patient safety. Patients and their relatives have the greatest knowledge of patients and can often pick up subtle signs physiological deterioration before this is identified by staff or monitoring systems (O’dell et al, 2011). If our relationship is strained, how can we, as nurses, advocate for the safety of our patients? So, what impact does low staffing have on the staff member? "Fully staffed today!" The mood lifts at handover. People are sat up, smiling, quiet excitable chatter is heard. This uplifting sentence is quickly followed by either: "Let’s keep this quiet" or "someone will be moved" or "someone will have to move to XX ward as they are down three nurses". Morale is higher when wards are fully staffed. The mood is different. There are people to help with patient care, staff can take their breaks at reasonable times, staff may be able to get home on time and there is emotional support given by staff to other staff – a camaraderie. The feeling does not last long. Another department is ‘three nurses down’. Someone must move to cover the shortfall. No one wants to go When you get moved, you often get given the ‘heavy’ or ‘confused’ patients. Not only that, you are working with a different team with different dynamics – you are an outsider. This makes speaking up difficult, asking for help difficult, everything is difficult: the ward layout, where equipment is stored, where to find documentation, drugs are laid out differently in the cupboard, the clinical room layout is not the same. The risk of you getting something wrong has increased; this is a human factors nightmare, the perfect storm. I am in fear of losing my PIN (NMC registration) at times. At some point I am going to make a mistake. I can’t do the job I have been trained to do safely. The processes that have been designed to keep me and my patients safe are not robust. If anything, it is to protect the safety and reputation of the Trust, that’s what it feels like. Being fully staffed is a rarity. Being moved to a different department happens, on some wards more than others. Staff dread coming to work for threat of being moved into a different specialty. Just because you trained to work on a respiratory, doesn’t mean you can now work on a gynae ward. We are not robots you can move from one place to another. I can see that moving staff is the best option to ensure efficiency; but at what cost? Another problem in being chronically short staffed is that it becomes the norm. We have been ‘coping’ with three nurses down for so long, that ‘management’ look at our template. Is the template correct, we could save money here? If we had written guidance on safe staffing levels, we still have the problem of recruitment and retention of staff; there are not enough of us to go around. Thoughts please... Does this resonate with you? Has anyone felt that they feel ‘unsafe’ giving care? What power do we have as a group to address this issue of safe staffing levels? References 1. Wears RL, Hollnagel E, Braithwaite J, eds. The Resilience of Everyday Clinical Work. 2015. Farnham, UK: Ashgate. 2. Griffiths P et al. The association between nurse staffing and omissions in nursing care: a systematic review. Journal of Advanced Nursing 2018: 74 (7): 1474-1487. 3. Recio-Saucedo A et al. What impact does nursing care left undone have on patient outcomes? Review of the literature. Journal of Clinical Nursing 2018; 27(11-12): 2248-2259. 4. O’dell M et al. Call 4 Concern: patient and relative activated critical care outreach. British Journal of Nursing 2001; 19 (22): 1390-1395.

The patient leaflet explains about the Call 4 Care service to patients, carers and families and contains information that may be helpful during their hospital stay. This template can be adapted and used by any trust in any setting.

Based on the author, Bonnie Friedman's own experiences, Hospital Warrior lays out in direct, simple terms hard-learned and time-tested tactics to help ensure a loved one's medical needs are met. Hospital Warrior also includes checklists and interviews with doctors and other healthcare professionals who provide essential tips and advice for the reader. Bonnie Friedman is passionate about hospital healthcare. Her expertise is hard-won, based on more than 24 years of advocating for her husband through 14 separate hospitalisations – some fairly routine, some quite dramatic and some truly life-and-death experiences.