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The charities have put together a 12-point plan across the two phases of the pandemic that NHS England are planning for, restoration (phase II) and recovery (phase III). Across all of these recommendations close monitoring and adequate action is needed to ensure inequalities are addressed. In addition, they have set out plans to get the significant transformation agenda for June 2020 cancer services back on track, as simply restoring to pre-COVID-19 levels and models of service is not sufficient to deliver the improved outcomes that patients in this country expect and deserve. Keeping baseline services running. Covid-protected environments. Diagnosis and referrals. Personalised care. Clinical trials. Supporting the vulnerable. Preventing cancer. Workforce. Screening programmes. Guidance. Innovation. Long-term ambitions.

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.

It has now been over 70 days since lockdown. Yes, the restrictions are easing – and this is great news for people who have been isolated for so long, it is great for the economy – but we are waiting for the second wave. My last blog spoke about how we are going to get back to ‘normal work’ and my anxieties about how we were going to do this. Slowly, we have been trying to get back to some kind of normal, but it feels confusing, slow and uncertain. None of us can see the ‘end’. None of us knows what the ‘end’ will look like, when it will happen or will even know when it happens. Remembering the early days of lockdown, the streets were empty, the roads were quiet, there were huge queues for food, and everyone seemed scared. It was a little like the post-apocalyptic film '28 Days Later'. We have all had our highs and lows: the NHS clap every Thursday, rainbows in windows, connecting with family, being furloughed, has meant some people have enjoyed lockdown. The flip side is that for some it has been a living nightmare: money worries, domestic violence, child abuse, operations cancelled and bereavements. Unlike the film that lasts 113 minutes, has a set plot that it follows and ends up with them being rescued, we are still stuck 70 days plus in and there seems no hope of a rescue. Real life does not offer us closure, does not always have a happy ending and, unlike dramas on the BBC, life is not always fair. I’m not even sure we are in the middle, which makes me feel even more helpless. I have been nursing for over 20 years. I have loved working with patients; I have even loved working in the institution that is the NHS. The politics, the hierarchy, the culture, yes, it's difficult work trying to negotiate around obstacles and blockers, but we do it and, weirdly enough, enjoy it. But this pandemic is different. In all honesty, I can’t do this anymore. Work was hard enough, but now it’s even harder. Knowing how to care for patients safely in the right area, wearing PPE all day, not being able to communicate properly through the masks, and having procedure and policy changing weekly, sometimes daily, is wearing. I feel like a new starter every day, especially after days off. I’m tired of it and can’t see an end. Due to this lack of enthusiasm, I feel I am failing at giving the care I want to, failing to give patients the care they deserve. This feeling is horrible. What kind of a nurse are you if you have ‘run out of care’? I know this is burnout. I didn’t want it to be. But it is. In January, I didn’t feel like this. This burnout has been because of the pandemic. I am interested to find out why now? I can’t be burnt out from a few months of difficult working conditions, can I? While looking into this and trying to make sense of my feeling, I came across Kanter’s Law. Rosabeth Kanter is a Harvard Business School Professor and according to her “in the middle, everything looks like a failure". Everyone feels motivated by the beginnings and obviously we love happy endings, but it is in the middle where the hard work happens. She states that in the middle, we all have doubts. This feeling is principally produced because important changes are not developed the way we would like it to, lineal and smooth. The changes that remain usually involve two steps forward and one step back. This is evident when we are trying to get back to ‘business as usual’ but new cases of the virus are detected and we can’t proceed as we thought. In addition, it’s easy to feel that when we are in the middle we are very far away from the expectations we had made. Unexpected events take place as well as deviations. What it had been estimated in regard to the need of resources appear to not be enough. It is then when despondency appears. We can’t plan, we can’t mitigate risks effectively, which often leads us into failure. This is why it’s important to fully understand that failure is a necessary part of change, because there will be periods of confusion in which the temptation to abandon will be great. I’m at the abandon bit! This work is difficult. I am not in the position where I can make big changes in my Trust. I must trust that others are making good decisions and they will support us if things don’t go as expected. Call to action I can’t be the only person feeling this now. What are Trusts doing to guide staff through uncertainty, prevent burnout and inform staff of plans for the future?

These guides include: Surgical patients Othopaedics Critical care Endocrinology Trauma Acute General medical Burns Cancer ED Paediatrics NIV Rheumatology Management of COVID positive patients Cardiothoracics plastics Max Fax Vascular Spinal Surgery Radiology Cardiology Muscular Skeletal Haematology Maternity TB.

Key findings Prisoners use hospital services far less and miss more hospital appointments compared with the general population. There is a noticeable drop in emergency admissions to hospital from the prison population in December. This is something that is not seen in the general population. Prisoners have particular health needs related to violence, drug use and self-harm. Injury and poisoning were the most common reason for prisoners being admitted to hospital. Hospital data reveals potential lapses of care within prisons for certain groups of prisoners, particularly pregnant women and prisoners with diabetes.