1 Royal College of General Practitioners: Deafness and hearing loss toolkit

This educational kit, developed by Royal College of GPs (RCGP) in collaboration with RNID and NHS England, aims to support GPs to consult effectively with deaf patients by offering tips on how to communicate during face to face and remote appointments. It offers guidelines on how to recognise early symptoms of hearing loss and how to refer patients for a hearing assessment. 

2 Communicating with patients with hearing loss or deafness—Can you hear me?

The authors of this JAMA article describe the experience of a family member who was in critical care, and who is deaf. They outline a lack of awareness amongst healthcare professionals about their relative's deafness and highlight the lack of understanding in how to communicate with her. They go on to outline a number of approaches to communicating with patients who are deaf or hard of hearing.

3 Inequalities and unreasonable adjustments: are D/deaf women being given a detrimental care pathway in the name of risk assessment?

In this article, published in The Practising Midwife, Rachel Crowe argues that in the UK, pregnant women who are hearing impaired or D/deaf (sign language users) and deaf (who are hard of hearing but who have English as their first language and may lipread and/or use hearing aids) are often labelled as high risk and offered a care pathway that is unsuitable and detrimental to their care. This article provides an overview to the needs of D/deaf birthing people with a number of recommendations and tools for use in clinical practice.

4 Blog - 12 tips for communicating with deaf patients

Communication barriers are the number one reason deaf people have poorer health compared to hearing people. This blog by the organisation SignHealth gives 12 tips for healthcare workers and non-clinical staff on how to communicate with deaf people. It also describes the difficulties deaf people face when booking appointments and describes why remote consultations are problematic for deaf people.

5 CardMedic: Empowering staff and patients to communicate across any barrier

In this interview, anaesthetist Rachael Grimaldi tells us about CardMedic, the organisation she founded to empower staff and patients to communicate across any barrier. Rachael explains how their tools can be used to support vulnerable groups and reduce inequalities. 

6 Accessible and inclusive communication within primary care: What matters to people with diverse communication needs

The primary care team have an important role in making people feel welcomed, listened to and taken seriously. Yet we often hear examples about people who have not had their communication needs met within primary care. This includes people with sensory impairments. This report from National Voices sets out the key issues faced by people with specific communication needs within primary care and what they feel would make the biggest difference, as well as key actions primary care leaders and teams can take to support inclusive communication. 

7 Independent Review of Audiology Services in Scotland

In January 2022 the Scottish Government asked for an independent review of the audiology services in Scotland in the context of failings in the standards of care provided in the NHS Lothian Paediatrics Services and made a series of recommendations.

8 The Safety Gap: Safety and accessibility of medicines and medical devices for people with sensory impairment

This report for the Patient Safety Commissioner for England, commissioned from Professor Margaret Watson, highlights serious gaps and deficiencies in the way that people with visual and/or hearing impairment or loss (referred to as sensory impairment) are able to access and use medicines and medical devices safely. The report presents the results of a short-term study to explore the challenges experienced by patients with sensory impairment in relation to their safe and effective access to and use of medicines and medical devices and offers a number of recommendations.

9 Kingdon review: terms of reference

Dr Camilla Kingdon has been appointed by the Secretary of State to chair an independent review of children's hearing services. The review will consider NHS England’s response to the service failures in paediatric audiology; how the relevant governance arrangements between NHS England and the Department of Health and Social Care could be improved and identify lessons learned; and how NHS England’s handling of any future service failures in similar services could be improved and identify lessons learned.

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Key levers for system transformation

1. Enhanced services for the identification, assessment and management of osteoporosis and high fracture risk in the community.

2. National audit of the whole osteoporosis pathway – extending the current audit of FLS to include osteoporosis healthcare delivered in primary and community care settings where most people with osteoporosis are managed over the long term.

3. Technological solutions for case-finding, identification of people at high risk, and routine follow-up of patients.

4. Local development of comprehensive osteoporosis pathways to deliver consistent, coordinated care to people with osteoporosis and reduce inequality.

5. National and regional leadership for osteoporosis care to promote collaboration and support the development of osteoporosis pathways.

6. Structured osteoporosis education for people diagnosed with the condition.

7. Patient-held Bone Health Management Plans that set out the appropriate actions, timings and responsibilities across the pathway.  

1 Sickle Cell Society: Standards for the clinical care of adults with sickle cell disease in the UK

These standards for the clinical care of adults with sickle cell disease were produced by the Sickle Cell Society in collaboration with a broad multi-disciplinary group of healthcare providers, patients and support groups.

2 The King's Fund: The implicit bias of sickle cell disease

Although health outcomes have improved, evidence shows that people with sickle cell still feel marginalised. Their frustrations largely stem from a perceived lack of empathy in a healthcare system that does not fully recognise their struggles. When compounded with limited treatment pathways, these poor experiences leave many feeling neglected and unsupported. This blog from CJ Nwasike discusses sickle cell health inequalities.

3 Sickle cell comparative review to inform policy report: Providing evidence-based recommendations to tackle inequalities

This study analysed data across a wide range of indicators and revealed striking inequalities, which were often reflected in the experiences of patients living with sickle cell across the country. The report adds further to the urgent need to address the underlying problems affecting the quality of care for patients with sickle cell. Importantly, this comparative research shows that improvements are also needed for other severe chronic conditions, such as cystic fibrosis and haemophilia, and that lessons can be learned from successes achieved in other specialties. This report includes a set of recommendations that aim to help tackle inequalities associated with sickle cell in the UK.

4 HSSIB: Invasive procedures for patients with sickle cell disease

This investigation from the Health Services Safety Investigations Body sets out to review the care of patients with sickle cell disease who need to have an invasive procedure. Invasive procedures involve accessing the inside of a patient’s body, either through an incision (cut) or one of the body’s orifices. Specifically, the investigation focused on:

• how haematology teams – the specialists who treat people with blood disorders – are involved and informed when a patient with sickle cell disease is treated in another area of healthcare
• how patients with sickle cell disease are prepared for invasive procedures
• how and where clinical information relevant to the patient is shared.

5 HSSIB: Management of sickle cell crisis

In this investigation, HSSIB used a real patient safety incident to explore how sickle cell crises are managed within hospital settings. In particular, the investigation considered:

• the knowledge nursing staff may have about the care of patients in sickle cell crisis
• how patient-controlled analgesia (PCA) – where a patient can use a device to give themself doses of pain relief medication – is considered holistically, such as monitoring the patient and staff workload.

6 Sickle Cell Society: 'The difference between life and death'

Following on from the care failures highlighted in the 2021 report, 'No one's listening', this Sickle Cell Society report takes a deeper look at sickle cell nursing care. The findings show the need for vastly more resources, training and support in this critical area of care. The report highlights that not only is no-one listening, but that lives are still being put at risk.

7 Treating chronic pain in sickle cell disease — The need for a biopsychosocial model

Clinicians are often unsuccessful at addressing chronic pain in sickle cell disease. In this perspective article in the New England Journal of Medicine, Childerhose et al. discuss how a biopsychosocial model can help capture people’s experience of chronic pain by affirming that biologic, neuropsychological, and socioenvironmental elements play a role in pain-related processes. 

8 Sickle cell digital discovery report: Designing better acute painful sickle cell care

The report explores the range of technology that is in place for accident and emergency clinicians, red-cell specialists, and ambulance care, to aid timely support to patients with sickle cell on their emergency hospital arrival. A number of focus groups and interviews were carried out with those that have lived experience of the disease, including patients who have suffered acute, painful sickle cell episodes during NHS A&E admissions. Research found a lack of individual care plans in place and, more broadly, no clear definition of what constitutes an actual care plan. A number of recommendations are set out in the report for the NHS and the wider healthcare system.

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Recommendations

Better data

Improve data access and use

• Enable access to and use of routine epidemiological data on sickle cell, including mortality and life expectancy data, for monitoring and commissioning purposes (Department of Health and Social Care and NHS Race and Health Observatory).

Drive accountability through data

• Use data to ensure and track equitable provision of NHS sickle cell care, holding systems accountable and driving continuous improvement (Department of Health and Social Care).

Better support

Fund action-focused research

• Prioritise dedicated funding calls for research aimed at improving patient access, experiences, and outcomes, in sickle cell care (National Institute for Health and Care Research, UK Research and Innovation, and Wellcome).

Strengthen workforce education

• Expand education of healthcare professionals and the sickle cell workforce, including specialist nurses, to provide safe and timely care across the NHS for people with sickle cell (Department of Health and Social Care).

Better treatment

Ensure access to curative therapies

• Guarantee affordability and accessibility of new curative treatments, such as Casgevy, for all eligible patients (Department of Health and Social Care).

Embed equity in clinical guidelines

• Ensure existing and future clinical guidelines for sickle cell proactively address and reduce racial bias and inequity (National Institute for Health and Care Excellence in collaboration with NHS Race and Health Observatory). 

The second part of this Collection explores recent NIHR evidence on the support children and their families need to understand and self-manage their eczema effectively. And finally, the Collection signposts ongoing NIHR research which aims to improve the quality of life of children with eczema in future. 

The information is intended for pharmacists, GPs and others who deliver and commission primary care services; it could be used to help patients and their families understand more about research into eczema care.

• A quarter (26%) of local authorities had people left waiting more than a year for a vision rehabilitation assessment and subsequent support.
• 86% of local authorities did not complete vision rehabilitation assessments within the ombudsman recommended 28 days, meaning nearly half (48%) of blind and partially sighted people did not receive their assessment in this timeframe.
• Nearly a quarter (22%) of local authorities have ongoing vacancies for specialist staff, and some areas have no vision rehabilitation specialists at all.
• A quarter (26%) of local authorities are using non-specialists to undertake vital assessments.
• Local authorities acknowledge they are struggling to accommodate the rise in demand for rehabilitation services and have uncertainty around the future of its provision.

Key recommendations

The RNIB is calling on the Secretary of State for Health and Social Care to ensure all blind and partially sighted people can access the support they need to live life to the full. We need national oversight of services to ensure they are consistently delivered to the required standard. To achieve this, the RNIB are asking:

1. Commission the National Institute for Health and Care Excellence to develop guidelines and quality standards, with local authorities having to report on these to government and publish annually.
2. Subject vision rehabilitation services to the same regulation and monitoring as other adult social care services. This could be done within the current legislative framework and by extending the remit of the Care Quality Commission. 
3. Recognise the skill and expertise of Vision Rehabilitation Specialists (and Qualified Habilitation Specialists) by making Vision Rehabilitation Specialists a regulated profession. 
4. Encourage better integration of services through strengthened links between secondary and social care settings, with a guaranteed route in to vision rehabilitation for everyone who needs it, whilst ensuring blind and partially sighted people are made aware of their rights and the services they can expect to receive. 

It is devastating to receive a diagnosis as vague as ‘body part dysfunction’ as it basically means your doctors don’t have a clue. I was unfortunate enough to receive two such diagnoses: temporal mandibular dysfunction (TMD), meaning ‘jaw problems’ and eustachian tube dysfunction (ETD), meaning ‘ear pressure problems’. The last twelve years of my life have been constant physical torture and I have suffered years of misdiagnosis and mistreatment by professionals and systems that I do not believe are set up in the patient’s best interest. 

My story

Twelve years ago I started to get pain and clicking in my jaw joint, alongside strange popping and pressure changes in my ear. My GP dismissed this as ‘stress’ and naively I believed them. My problems were getting worse and worse to the point that it was preventing me from sleeping, socialising or even thinking straight. In constant agony and severely sleep deprived, I began having suicidal thoughts.

I had been going around in circles through the health service. Three dentists had told me my ‘bite’ was fine and three jaw doctors had told me my joint was fine. I was given a diagnosis of ‘muscular TMD’ and several of these professionals implied that I was causing my own health problems through some kind of personality flaw, throwing phrases like “stress grinder”, “neurotic personality” and “psychogenic component” at me. On the ear, nose and throat side of things, numerous scans and endoscopes up my nose found nothing wrong with the pressure tube to my ear. After years of being passed around and having just been handed another nine month NHS wait, I called the same ENT surgeon’s private clinic and they could fit me in the same day. With my life wasting away I began paying for private treatment. I had several courses of antibiotics and even had my tonsils out under the premise that a chronic infection might be affecting the nearby muscles. It made no difference and I was inconsolable.  

At that point, I revisited an issue previously ruled out by several professionals—my teeth. I found a dentist from one of several study groups who claim to treat jaw problems. This dentist had a pressure sensor that you bite on and when he tested my teeth there was twice the pressure on one side of my bite compared with the other, indicating that my teeth and jaw didn’t align. Finally, after several years of going around in circles, I had some evidence of what was wrong. A cone beam computed tomography (CBCT) with my teeth together showed clearly that my bite and jaw were not aligned. This dentist began making me a splint and the moment there was some change to my bite it became clear that my teeth were the cause of my jaw and ear symptoms.

However, little did I know that my problems were just beginning. I am certain that the dentist was simply guessing when making adjustments to my splint. After many adjustments, he was just changing my symptoms and not figuring anything out and he handed me over to an orthodontist with a half-effective splint. 

When I saw this orthodontist, he scolded me for suggesting that orthodontics might have something to do with jaw function. At the same time, he claimed great success treating patients like me. I was concerned by this contradiction so I sought another opinion. The next orthodontist laughed in my face at the idea that the teeth could affect the jaw. The next tried to sell me a ‘tongue training device’. After several more wildly different opinions from professionals I returned to the first orthodontist, doubting his trustworthiness but hoping he was competent. He wasn’t, and left me in a far worse situation than before. It has been over a decade and my bite and my symptoms are worse than ever. 

A culture of victim blaming

My experience of the health service has been consistently negative. I have been mocked, scolded, condescended and gaslighted by the people who are supposed to help me. I joined an online victims group with thousands of members and most of the people in the group went for cosmetic orthodontics and left with jaw problems. Some have biting problems caused by badly done crowns and fillings. Many victims have had multiple teeth pulled out or orthodontic headgear that left them with pain and disfigurement. Small jaws due to tooth extractions are even advertised as a beauty standard in some countries. Orthodontics seems like the wild west.

Inadequate and misleading research

Biting is mechanically complex and I believe the methods used by dentists to diagnose biting problems are insufficient. In my experience, hand drills and articulating paper are inadequate ways of making splints. A visual inspection is only a superficial way of aligning teeth. What the victims need are high quality scans and splints made by computer simulation of bite and jaw. In my opinion this is PhD level mechanical engineering and far beyond dental professors’ abilities. Instead of researching and improving treatment options, they use all kinds of statistics to deny that the teeth affect the jaw and instead blame the patients. Many people don’t feel able to speak up about their experiences or share their concerns, as they are worried about how this will affect their ability to receive treatment in the future or even fear legal action from the professional who harmed them.

I believe that members of the orthodontic industry have built this incredible wall of ignorance around themselves and unfortunately it is getting worse. The current trend in dental research is to claim that splints don’t work as a reason to ignore the whole concept, instead of acknowledging the inaccuracies in making them by hand. All the while, orthodontists are carrying out more and more cosmetic procedures, seemingly washing their hands of the people they harm and abandoning them to a life of suffering.

The orthodontics industry, which advertises ‘excellence’, ‘perfection’ and ‘wonderful patient experiences’ is hiding the suffering of many patients. No one knows how many people have been harmed by cosmetic procedures as no evidence is collected.

No one knows how many people are going around in circles through the health service with debilitating jaw, ear and throat problems caused by the alignment of their teeth and jaw. They are not being diagnosed.

A call to action

I believe that these are longstanding issues as I have met victims who were harmed decades ago who have had no investigation or recourse to justice. An independent Government review is necessary. 

Patients should have the right to a complete diagnostic process and I am still shocked that alignment of bite and jaw isn’t considered by NHS jaw doctors. I would like to see bite pressure sensors and scans of the jaw with the teeth together become a regular part of the diagnostic process. As for treatments, I strongly believe that the current methods of manufacturing splints are inadequate and progress requires the assistance of mechanical engineers. Dental research should not be isolated from outside scrutiny and dental records should not be separated from medical records.

Share your experience

If you've recently had orthodontist or dentist treatment, we'd love to hear about your experience, whether positive or negative. You can:

• post anonymously in our community conversation about orthodontists and dentistry
• comment on this post

Find out how to request accessible information from your NHS or social care provider, and how to complain if you don't receive it.

Resources for health and care professionals

Information and resources for health and care professionals, to support implementation of accessible information for blind and partially sighted patients and service users.

• Organisation of care
• Primary care
• Health and wellbeing
• Acute and chronic pain
• Neurological complications
• Cardiorespiratory complications
• Renal and urological complications
• Priapism
• Fever and sepsis
• Orthopaedic complications
• Gastroenterological and hepatobiliary complications
• Ophthalmological complications
• Anaemia
• Leg ulcerations
• Outpatient management
• Reproductive health
• Surgery
• Hydroxycarbamide
• Blood transfusion
• Iron chelation
• Haematopoietic stem cell transplantation
• Emerging therapies