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NHS England has set a target that cervical cancer will be eliminated in England by 2040. Although progress has been made in detecting and treating cervical cancer, there are still many women who are reluctant to go for cervical screening, or who face barriers to accessing screening. These barriers include perceived discrimination, lack of understanding the risk of cervical cancer and unmet access needs. This contributes to persistent health inequalities amongst particular groups. Patient Safety Learning has pulled together nine useful resources shared on the hub about how to improve access and overcome barriers to cervical screening. 1. Cervical screening, my way: Women's attitudes and solutions to improve uptake of cervical screening This research by Healthwatch explored why some women are hesitant to go for cervical screening. Based on the findings of a survey of more than 2,400 women who were hesitant about screening, it makes recommendations to policymakers on how to improve uptake, including: improvements to the way data about the disability and ethnicity of people attending screening. producing an NHS-branded trauma card for affected women to bring to appointments. ensuring staff are effectively trained on accessibility and adjustments to care. looking at the possibility of home-based self-screening. 2. Exploring the inequalities of women with learning disabilities deciding to attend and then accessing cervical and breast cancer screening, using the Social Ecological Model Women with learning disabilities are less likely to access cervical and breast cancer screening when compared to the general population. In this study, the Social Ecological Model (SEM) was used to examine the inequalities faced by women with learning disabilities in accessing cervical and breast cancer screening in England. The study highlights key barriers to access for women with learning disabilities. 3. “We’re not taken seriously”: Describing the experiences of perceived discrimination in medical settings for Black women Black women continue to experience disparities in cervical cancer despite targeted efforts. One potential factor affecting screening and prevention is discrimination in medical settings. This US study in the Journal of Racial and Ethnic Health Disparities describes experiences of perceived discrimination in medical settings for Black women and explores the impact of this on cervical cancer screening and prevention. The authors suggest that future interventions should address the poor quality of medical encounters that Black women experience. 4. Top tips for healthcare professionals: Cervical screenings This article by the Royal College of Obstetricians & Gynaecologists and the My Body Back Project offers tips for healthcare professionals to make cervical cancer screening attendees feel as comfortable as possible during their appointments. Cervical screening can be very daunting for some women, and for those who have experienced sexual violence it can be triggering and cause emotional distress. The article provides tips on communication, making the environment calm and safe, sharing control and building trust with women. 5. The Eve Appeal: What adjustments can you ask for at your cervical screening? The Eve Appeal want to raise awareness of what adaptations women and people with a cervix can ask for during their screening to make the appointment more comfortable. 6. How can reframing women’s health improve outcomes? An interview with Dr Marieke Bigg Dr Marieke Bigg is the author of a 2023 book, This won’t hurt: How medicine fails women. In this interview, Marieke discusses how societal ideas about the female body have restricted the healthcare system’s approach to women’s health and describes the impact this has had on health outcomes. She also highlights areas where the health system is reframing its approach by listening to the needs of women and describes how simple changes, such as allowing women to carry out their own cervical screening at home, can make a big difference. 7. Having a smear test. What is it about? This download A4 Easy Read booklet from Jo's Cervical Cancer Trust uses simple language and pictures to talk about smear tests. It explains what a smear test is, has tips for the person having the test and has a list of words they might hear at their appointment. 8. Health Improvement Scotland: Cervical screening standards Published by Healthcare Improvement Scotland in March, the new cervical screening standards include recommendations to ensure women receive accessible letters and information about screening and healthcare professionals are trained to support women to make informed choices. 9. Cervical cancer screening in women with physical disabilities This US study explored how the cervical cancer screening experiences of women with physical disabilities (WWPD) can be improved. Interviews with WWPD indicated that access to self-sampling options would be more comfortable for cervical cancer screening participation. The authors highlight that these findings that can inform the promotion of self-sampling devices for cervical cancer screening. Have your say Are you a healthcare professional who works in women’s health or cancer services? We would love to hear your insights and share resources you have developed. Perhaps you have an experience of cervical screening or cervical cancer that you would like to share? We would love to hear from you! Comment below (register as a hub member for free first) Get in touch with us directly to share your insights

Recent care scandals show that the system has been failing too many people with learning disabilities and autism for too long and we need a new approach to restraint. This webinar will look at restraint, how it can be avoided - and when it can’t be avoided how it can be done safely and ethically with a human rights approach. Evidence shows that nurses are seeing more behaviours that challenge than ever before, so it's important to have the skills and knowledge to deal with situations when they arise. As well as examining issues around restraint and seclusion, our panel of experienced nurses will give you practical strategies to use restraint effectively and safely for both you and the service user. Register

Recent care scandals show that the system has been failing too many people with learning disabilities and autism for too long and we need a new approach to restraint. This RCNi event will look at restraint, how it can be avoided - and when it can’t be avoided how it can be done safely and ethically with a human rights approach. Evidence shows that nurses are seeing more behaviours that challenge than ever before, so it's important to have the skills and knowledge to deal with situations when they arise. As well as examining issues around restraint and seclusion, our panel of experienced nurses will give you practical strategies to use restraint effectively and safely for both you and the service user. Register

Learning Disability Week is the third week of June every year. The event, organised by the charity Mencap, is an opportunity to raise awareness about different learning disabilities and challenge some of the barriers people who have learning disabilities face. According to Mencap, a learning disability is a person's reduced intellectual ability, meaning they can face difficulty with everyday activities. People with a learning disability can sometimes need extra support to learn new skills, understand complicated information or interact with other people. It can be particularly challenging for people with learning disabilities and their families when accessing healthcare services. To mark Learning Disability Week, we are sharing 14 resources, blogs and reports from the hub for patients, their families and healthcare professionals on breaking down these barriers. 1 Exploring the inequalities of women with learning disabilities deciding to attend and then accessing cervical and breast cancer screening, using the Social Ecological Model Women with learning disabilities are less likely to access cervical and breast cancer screening when compared to the general population. In this study, the Social Ecological Model was used to examine the inequalities faced by women with learning disabilities in accessing cervical and breast cancer screening in England. The authors suggest that multiple methods to reduce the inequalities faced by women with learning disabilities are needed, and that these can be achieved through reasonable adjustments. 2 Pharmacists can do more to bridge the safety gaps for people with learning disabilities People with learning disabilities are more likely to be taking multiple medicines, but labels are not designed with them in mind. This article in the Pharmaceutical Journal looks at a project run by a team at Leeds and York Partnership NHS Foundation Trust. The team ran exploratory workshops to listen to how people with learning disabilities engaged with information on medicines at home, at the doctors and at the pharmacy. The project highlighted that it is time to move away from standard labels and look towards more personalised medicine labels, actively promoting ways to support people with learning disabilities in taking their medicines. 3 Exploring deep sedation at home to support people with learning disabilities to access medical investigations with minimal distress In this blog, Mandy Anderton, a Clinical Nurse specialising in learning disability, explains how they are using shared decision making and reasonable adjustments to implement a new care pathway, where patients with a learning disability needing to undergo a medical investigation can receive deep sedation within their own home. Working with patients, carers, relatives, anaesthetists and others, the aim is to improve access to important medical investigations with minimal distress, where other avenues have been exhausted. 4 NHS England: Ask Listen Do – feedback, concerns and complaints Ask Listen Do resources are designed to support organisations to listen, learn from and improve the experiences of children and adults who are autistic or have a learning disability, their families and carers, and make it easier for people, families and paid carers to give feedback, raise concerns and complain. 5 NHS England: Guidance to support implementation of the Mental Capacity Act in acute trusts for adults with a learning disability This guidance supports trusts and community providers in enabling frontline staff to fulfil their legal requirements under the Mental Capacity Act (MCA) 2005, specifically when supporting people with a learning disability. Leadership within Trusts have been asked to ensure they understand the guidance, take the actions indicated and make these resources available to all frontline staff. 6 Tommy Jessop: Why I investigated hospital care for people like me People with a learning disability are more than twice as likely to die from avoidable causes than the rest of the population. Actor Tommy Jessop and BBC Panorama investigated some of the stories of families who say they were let down by their medical care. 7 How can GP practices help improve health outcomes for people with learning disabilities? In this Patient Safety Learning interview, Mandy Anderton explains some of the barriers people with a learning disability face in accessing safe care and how adjustments can be made within GP practices to improve outcomes. Mandy lists national improvements that she believes would reduce health inequalities in this area. 8 Making reasonable adjustments for patients with a learning disability is G.R.E.A.T. Developed by David Havard, this poster shows a number of ways in which reasonable adjustments can easily be made for patients with a learning disability. 9 HSSIB: Caring for adults with a learning disability in acute hospitals The aim of this investigation and report is to help improve the inpatient care of adults with a known learning disability in acute hospital settings. It focuses on people referred urgently for hospital admission from a community setting, such as a person’s home or residential home. 10 Video: The Oliver McGowan Mandatory Training on Learning Disability and Autism This animation aims to help staff and employers across health and social care understand Oliver's Training and why it is so vitally important. It was co-designed and co-produced with autistic people and people with a learning disability. Oliver McGowan died aged 18 in 2017 after being given antipsychotic medication to which he had a fatal reaction. He was given the medication despite his own and his family's assertions that he could not be given antipsychotics, and the fact that this was recorded in his medical records. The animation tells his story and highlights the increased risks facing people with learning disabilities and autism when accessing healthcare. 11 Palliative Care for People with Learning Disabilities The Palliative Care for People with Learning Disabilities (PCPLD) is a charity created to ensure that patients with learning disabilities receive the coordinated support they need throughout their life. The PCPLD Network brings together service providers, people with a learning disability and carers working for the benefit of individuals with learning disabilities who have palliative care needs. 12 Nobody left behind: Improving the health of people with learning disabilities and reducing inequalities across primary care Mandy Anderton talks in depth about the cross-system programme they launched in Salford to improve the health of people with learning disabilities and reduce inequalities across primary care. Mandy shares their award-winning poster, summarising the programme’s activities and outcomes, and gives her top tips for delivering a successful patient safety improvement project. 13 Reasonable adjustments and designing services for patients and people with learning disabilities Caring for people with learning disabilities in an acute hospital setting can be challenging, especially if that patient has transitioned from children’s services to adult services. The experience in children’s acute care differs to adult acute care; this difference in processes of care can cause great anxiety for the patient and their family and carers. The reasonable adjustments that were perhaps made and sustained in children’s services may now not exist. The purpose of this blog is to demonstrate the importance for services to be designed around patients’ needs with patients, families and carers. If we get this right, the quality of care given will be improved, patient satisfaction increases and, in turn, a reduction in patient harm. 14 Journey home to a rightful life in the community: Richard's story part 2 Richard has a learning disability and has spent time in hospital. His mum shares his story through this video about their journey to find the Right Care in the Right Place.

Constipation can be a life–threatening issue for people with a learning disability who are at heightened risk from complications if it is left untreated. This campaign has been developed by NHS England to support people with a learning disability, their carers and people who work in primary care to recognise the signs of constipation. Resources have been co–created with input from the Down’s Syndrome Association, Mencap and Pathways Associates to ensure that they are fit for purpose. The resources aim to: Drive awareness of the seriousness of constipation Help people recognise the signs of constipation at an early stage Empower people to take action and ensure that people with a learning disability experiencing constipation get the right health support straight away Raise awareness of the steps which can be taken to prevent constipation.

Mandy Anderton is a Clinical Nurse specialising in learning disability and a hub Topic Leader. In this new blog, Mandy explains how they are using shared decision making and reasonable adjustments to implement a new care pathway, where patients with a learning disability needing to undergo a medical investigation can receive deep sedation within their own home.  Working with patients, carers, relatives, anaesthetists and others, the aim is to improve access to important medical investigations with minimal distress, where other avenues have been exhausted.  Health inequalities and barriers to care People with learning disabilities experience higher levels of physical ill health, yet they face serious health inequalities and have lower life expectancy, dying on average 25 years sooner and frequently from avoidable and preventable conditions [1]. An inability to express pain or general feelings of being unwell (or this resulting in behaviour described as challenging) can lead to delays or problems with diagnosis or treatment, identifying needs and providing appropriate care. People with a learning disability might struggle to engage with medical interventions due to lack of understanding or fear, whilst uncertainty amongst medical professionals about capacity and consent can all lead to further delays. People with learning disabilities often struggle to engage with diagnostic tests like having blood taken or having a scan. This can lead to delays in care and treatment and have an impact on health outcomes. Reasonable adjustments Under the Equality Act 2010, there is a legal duty for public bodies to make reasonable adjustments for people with a learning disability. Equality is not necessarily about treating everybody the same. Rather, it is treating a person with a learning disability in such a way that the outcome for that person can be the same. Reasonable adjustments can be put in place, for example prescribing small doses of oral sedation to reduce anxiety or undertaking desensitization and preparation work on an individual basis. But these things do not work for everyone and can take time (which is no use in urgent situations). Clinical holding is also not always appropriate to every situation or individual. Bringing diagnostic tests to the home Salford Care Organisation (part of the Northern Care Alliance) has started to explore the use of deep sedation in the home to support people to have essential investigations, with the additional option of an anaesthetic if needed. Perceived benefits of these changes to practice are earlier diagnoses and treatment of medical conditions. Both of which promote equality and reduce mortality and premature death for people with a learning disability. The general idea is that when blood tests or other diagnostic tests or procedures are required (scans can be tricky for people to engage with also), GPs would be able to refer direct to a dedicated anaesthetic clinic for this support. Mental capacity Healthcare professionals need to work within the Mental Capacity Act (2005) and if the patient’s capacity is in question, a Mental Capacity Assessment is undertaken. If the person is considered to lack capacity, then decisions will be taken in their best interest. This process will include relevant medical professionals, family, and carers. If the person does not have a family member or friend to advocate on their behalf, then an Independent Mental Capacity Act Advocate will be asked to join these discussions. Best interest decision-making Least restrictive options are always considered and often tried first– this might be desensitization work, longer appointment times, giving oral sedation, working up to possible clinical holding or deep sedation or anaesthesia if needed. Legally the person proposing the procedure is always the lead for best interest and capacity but others will provide significant input. It is likely there will be on-going meetings and different best interest decisions are made as different interventions are tried and considered. The best interest decision process will consider the pros, cons of each intervention, always starting with least restrictive option and working upwards if needed. The likely consequence of doing nothing will also be considered against risk of anaesthetic and distress to the person and weighed up against the risk of not treating a possible underlying health issue. Safety considerations and risk assessment Safety is our priority. Fiona Armstrong, Consultant Anaesthetist, developed a policy around the new approach and this contains a lot of the detail around how we manage risk. The policy was approved last year, and we have attached the document at the bottom of this page for anyone interested. Fiona has also shared some of the key safety features below: The patient has to be suitable. They cannot be a predicted high anaesthetic risk. This would include certain medical problems, anticipated difficult to manage airways, high BMI or previous problems with anaesthesia. The home has to be suitable – within 30mins blue light transfer of the hospital. The ambulance team also needs to be able to safety extract the patient from the location that sedation is administered. Anaesthetist and anaesthetic assistance, trained in transfer, attend with all kit to be able to safely administer oxygen, secure IV access, give supportive medications or provide a full anaesthetic should an adverse event occur. The patient’s vital signs are monitored as soon as sedation takes effect and for the journey. Full area for immediate administration of anaesthetic is set up at the hospital. Home visit occurs prior by the ambulance team to ensure suitability and plan number of staff/extraction kit. Patient’s support team are involved in the planning process of how, when and where sedation is administered to minimise distress and improve safety whilst medication takes effect. We are at the very early stages of exploring this as a care pathway and only two people have been through the process so far, both cases have gone smoothly. Many others have managed with oral sedation to make it to the carpark and have the deep sedation administered there and others are currently undergoing planning and the best interest process. Case study - John A gentleman with severe learning disabilities and autism, John has a longstanding fear of needles, medical professionals and environments. Blood tests, an echocardiogram and ultrasound scan were needed to help identify any underlying, and potentially serious, medical cause for his swollen ankles. Opportunities for desensitization had been exhausted and attempts to take blood with the support of regular oral sedation had proved unsuccessful. Working together and within the legislation of the Mental Capacity Act (2005), John’s family, support team and health care professionals from both general health services and the Adult Learning Disability Team came together to form an individualised plan, which would enable John to have deep sedation (with the option of a general anaesthetic if needed) in his own home before being safely transported to hospital for further care and treatment. Feedback I’ve spoken to both of John’s carers (he lives in 24-hour support) and his mother. His mother couldn’t praise the support enough, saying how much re-assurance it had given her knowing that his health concerns had been taken seriously and investigated. She is more reassured for the future and thinks the pathway should be available everywhere. John’s carers also felt it suited his needs well: “Fiona, the anaesthetist, went to his home and basically just worked within John’s usual routine, which was so important as John is also autistic and has very rigid routines that he needs to adhere to. John was totally calm and does not appear to have been adversely affected in any way at all. He went straight back to his usual self, following return from hospital, as if nothing had happened”. Chris Connell, Head of service (supported living), Aspire for Health and Intelligent Care and Support Reflections so far Resources are needed to make this into a recognised referral pathway with dedicated theatre time. At the moment, it happens a little ‘ad-hoc’ and people are fitted in when our anaesthetist can find gaps on theatre lists. Funding is currently being considered. Working collaboratively has been key, with clear coordination and on-going meetings to revisit decision-making where needed and agree fresh plans. The visit to give John deep sedation in his home was very carefully planned beforehand to help ensure it ran in line with his routines and had the very best chance of success. Listening to John’s carers and family were key in gathering information about how best to support him. The service is completely personalised, which works best for people with a learning disability. Sedation can be given in the home, where a person is most comfortable and relaxed and can fit around their usual routines. So far, we have seen people get the medical investigations they needed in a timely manner with little, if any, stress to themselves. I’m not sure how we would have moved forward for John without this process as we had exhausted all other avenues. We need to continue to connect with key stakeholders such as community teams and hospital specialists. To make sure they know the service exists and to consider it for patients who need investigations, where other reasonable adjustments have failed. [1] (Learning Disability Mortality Review Programme, 2020) Share your thoughts Do you or someone you care for have a learning disability? Perhaps you work in healthcare and would like to help reduce the inequalities experiences by people with a learning disability. What do you think about the approach described in the blog? Please share your thoughts by commenting below (register for free first) or contact us at [email protected]. You can also get in touch with Mandy directly at [email protected] to find out more about this work. Related content Nobody left behind: Improving the health of people with learning disabilities and reducing inequalities across primary care How can GP practices help improve health outcomes for people with learning disabilities? Interview with a Community Learning Disability Nurse CS008 V1 Home Sedation and Transfer Service for Patients with Complex Needs requiring Hospital investigations and treatment (002) (1).pdf