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Presented in the letter are six actions targeted at nursing, care and residential home managers, governments/local authorities, the infection prevention and control community, health care leaders, families and campaigning groups, to help everyone move forward with revised decisions. Nursing, care and residential homes: Allow normal family interactions by stopping restrictions and instead continue to inform and support families on the steps to take for safe contact in a spirit of trust and cooperation. Be confident that restricting visits should not be used as a replacement or shortcut for inadequate infection prevention and control measures – address gaps in safe practices where they exist. Commit to using infection prevention and control as an enabler that will protect staff, residents and families. Government, local authorities/public health departments: Remove any statements that may be seen to justify “blanket bans” on visiting. Instead actively vocalize the need for local decision makers to facilitate safe, normal interaction, appropriate to the local situation. Even where an outbreak occurs and some restrictions may be warranted, make it clear that safe, compassionate exemptions must still prevail and be actively facilitated. Continue to address gaps in safe practices and lack of resources, in order to facilitate infection prevention and control. Infection prevention and control community: Speak up in support of safe family interactions now and apply infection prevention and control with compassion. Actively facilitate safe family interactions and support planning to ensure adequate infection prevention and control supplies, and the implementation of training and communication activities/materials. Healthcare leaders: Speak up and support infection prevention and control with compassion, respect infection prevention and control expertise but help apply it in support of the ethos of this letter. Families: Understand, respect and adhere to the infection prevention and control recommendations requested of you to support the safety of yourself, your loved ones and care home staff. Campaigning groups: Use this letter to support your efforts.

The taskforce carefully considered an extensive range of issues in relation to the social care sector as a whole, brought together as key themes. These included the provision of personal protective equipment, COVID-19 testing arrangements, the winter flu vaccination programme, infection prevention and control, and issues of funding. The taskforce examined a number of issues relating to the workforce and family carers (unpaid), including how best to restrict the movement of people between care and health settings. Among other themes, the taskforce reviewed the role of clinical support within the sector, the availability and application of insights from data, and implications of inspection and regulation. This report sets out the action that will need be taken to reduce the risk of transmission of COVID-19 in the sector, both for those who rely on care and support, and the social care workforce. This report sets out how we can enable people to live as safely as possible while maintaining contacts and activity that enhance the health and wellbeing of service users and family carers. Throughout this report, a number of recommendations are made based on learning from the first phase of the pandemic. They range from 'quick wins' to consideration of topics that will require a degree of more substantial change and/or additional resource. In addition, there are a number of supporting recommendations in the annexed reports of the subject-specific advisory groups, which should be considered in tandem with the main report recommendations.

This was an explorative study, with qualitative in-depth interviews of 23 family carers of older people with suspected or diagnosed dementia. Family carers participated after receiving information primarily through health professionals working in dementia care. A semi-structured topic guide was used in a flexible way to capture participants’ experiences. A four-step inductive analysis of the transcripts was informed by hermeneutic-phenomenological analysis.

This first insight document focuses on adult social care: reviewing data on outbreaks, deaths and availability of personal protective equipment (PPE), and in particular highlighting the impact of COVID-19 on staff wellbeing and the financial viability of adult social care services. It describes the need – now more acute than ever – for whole system working across different sectors to ensure safer care. It also outlines future areas of focus, including infection control both within and between services, how local systems are engaging social care organisations in the management of COVID-19, and how care for people from vulnerable groups is being managed through the crisis.

Under the Equality Act 2010, public sector organisations must make changes in their approach or provision to ensure that services are accessible to disabled people as well as everybody else. This series of guidance shares information, ideas and good practice in making reasonable adjustments for people with learning disabilities in specific health service areas. It is aimed at health and social care professionals and family members who provide support for, or plan services used by, people with learning disabilities. There is also an easy-read summary for each service area.

The PBS resource includes: 1. What is Positive Behavioural Support? 2. What should Positive Behavioural Support look like? 3. Questions to ask to check whether Positive Behavioural Support is being used well 4. Family carers using Positive Behavioural Support 5. Practical tools Developing a behaviour support plan for your relative is a crucial step in delivering effective Positive Behavioural Support. In this updated resource you can find out about the key components of a behaviour support plan and how it can be used.

Book 1 – will help you to understand more about Positive Behavioural Support. Book 2 – will help you to think about what you need to have a good life. These things need to be in your positive behaviour support plan. Supporters Guide – if you need someone to help you look at these books and write things down, this guide has been written for your supporter to explain what to do. What is behaviour and PBS?

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.