NICE campaign: what changes to NICE and SIGN guidance would you like to see?

When we launched our health campaign, A NICE Life, earlier this year to explore how the premature mortality of people with learning disabilities and autistic people could be minimised, we proposed that evidence-based, independent recommendations for health and social care professionals could be the first step.

The National Institute for Health and Care Excellence (NICE) and the Scottish Intercollegiate Guidelines Network (SIGN) both enhance the quality of care for patients by developing clinical guidelines for doctors and healthcare practitioners on health and public health issues. They also establish standards of care for healthcare providers, such as hospitals, to follow.

Many charities and organisations have lobbied NICE and SIGN over the years to amend guidance. The most notable include MIND’s campaign urging NICE to update its guidelines to ensure that everyone leaving the hospital after a mental health crisis receives follow-up care within 48 hours.

Endometriosis UK also campaigned to update NICE guidance to address gaps such as access to pain management and mental health support.

What is our NICE Life campaign?

A NICE Life calls on NICE and the SIGN to include additional information in all relevant clinical guidance to highlight and address health inequalities faced by people with a learning disability and autistic people.

The aim is to create and deliver practical guidance to healthcare professionals, focusing on key elements such as understanding barriers to healthcare, engaging with people with lived experience, their families and carers, addressing diagnostic overshadowing, and understanding the laws related to the Mental Capacity Act, Equality Act, and Human Rights Act.

We began the campaign by asking people/organisations to answer three key questions:

1. What changes to NICE/SIGN guidance would you like to see that will help end the premature mortality of people with learning disabilities and autistic people?
2. What could the sector itself do better to improve health inequality?
3. Do you have any other ideas or innovative solutions to help prevent preventable deaths?

Then, based on the answers, we will write an open letter to both NICE and SIGN, specifying how we think they should update their guidance for healthcare professionals.

We received hundreds of responses, and this article examines the answers to the first question about what could be included in NICE/SIGN guidance.

What were the main themes that NICE should address?

The majority of respondents agreed that including a section on people with learning disabilities and autistic people in all relevant NICE/SIGN guidance would be a positive step forward.

Lisa Hopkins, Chief Executive of SeeAbility, said that the LeDeR (Learning from Lives and Deaths) report is a vital resource for understanding the health issues from which people are dying and pinpointing the guidance that should be prioritised within the range of advice from NICE/SIGN.

She stated that LeDeR has consistently identified cardiovascular disease, respiratory illnesses such as pneumonia, cancers, and epilepsy as factors contributing to preventable deaths. These areas should at the very least be prioritised, so clinical guidelines include both vigilance and advice on supporting people with a learning disability.

Some professionals, such as Jim Blair, Consultant Nurse Learning Disabilities, questioned whether the healthcare needs of people with learning disabilities, with or without autism, should be distinguished in healthcare policy from those with autism without a learning disability.

Others said that strict processes for responding to consultations create barriers for people with lived experience to contribute, which means that practice guidance remains within clinical circles and is not widely known. Therefore, any new information included in NICE/SIGN guidance needs to be co-produced and accessible.

Furthermore, children and young people with learning disabilities and autism must have their specific health needs and risks addressed in NICE/SIGN guidance.

Effective communication with healthcare professionals

A key theme across all responses was effective communication. There was a call for GPs to make it mandatory to have a learning disability lead in their practice who would train staff on how to communicate with people with learning disabilities and autistic individuals.

There were also suggestions to encourage NICE to include appropriate communication tools in their guidance, such as ensuring that all relevant information is available in Easy Read or using Books Beyond Words as a communication resource.

Allowing people with learning disabilities more time during appointments to process information and express their feelings and needs was another critical issue. This would ensure that they are taken seriously when discussing their health.

Self-advocates from My Life My Choice said that NICE/SIGN should also consider new technology and how people can be supported to use it, rather than just being confused by it. They should also look at how social care and healthcare can work better together in the community.

Listening to parents and carers

Some respondents also believed it should be compulsory for healthcare professionals to listen to those who know the individual well and not dismiss their input. One respondent stated that parents should be regarded as allies rather than as a nuisance or even the cause of the issue. Similarly, paid carers should not be viewed as a hindrance or problem, but instead be recognised as skilled professionals in their own right.

Respondents believed this was crucial because very few healthcare professionals have a thorough understanding of learning disability/autism and the associated risks, such as assuming someone will eat when hungry, speak if in pain, or that they can control their behaviour.

Confidentiality should not be seen as a barrier to services or practitioners listening to the opinions of people who know others well, even if they cannot discuss it directly. There should also be greater transparency and candour when something does go wrong, so that proper learning occurs and similarly designed situations are prevented.

It also deemed essential that time be allocated to meet with parents or carers to discuss concerns, as “often consultants/doctors do not have time to communicate with those advocating for an individual”.

Multidisciplinary meetings, including parents and advocates, were suggested as a potential solution.

Use of learning disability nurses

Many respondents also highlighted the crucial role of learning disability nurses, urging NICE/SIGN to ensure that specialised, dedicated learning disability nurses are present in all hospitals to promote understanding among other medical professionals.

This is because people with learning disabilities are at a higher risk of being ignored or misunderstood in healthcare settings and face discrimination, neglect, or abuse. The risk would decrease if learning disability nurses were involved in decisions about a person’s care.

They also understand complex needs and are trained to adapt care to meet these needs safely and compassionately.

This remains a widespread concern in the sector. Recently, a coalition of health organisations and disability campaigners sent a joint letter to the Health Secretary, Wes Streeting, warning of an “imminent collapse” in learning disability nursing that could result in more preventable deaths among people with learning disabilities.

The letter from organisations such as the Royal College of Nursing, Mencap, the Down’s Syndrome Association, and the Challenging Behaviour Foundation urges the Government to reaffirm and fund the training targets outlined in the NHS Workforce Plan. It also calls for the initiation of national recruitment campaigns to attract new learning disability nurses.

Reasonable adjustments and NICE guidance

Learning disability nurses also play a crucial role in identifying and implementing “reasonable adjustments” for people with learning disabilities in healthcare settings, so that the individual is treated with respect and understanding.

Reasonable adjustments in healthcare are modifications to how services are provided to ensure disabled individuals or those with other long-term health conditions can access care equally.  These are as required by the Equality Act 2010.

Respondents indicated that NICE/SIGN should ensure that reasonable adjustments are integrated into all existing health pathways to promote equitable access to care and treatment. There should also be more specific guidance on making reasonable adjustments to enable people to access health screening and investigations. They also need to be “meaningful and effective”.

Staff training and learning disabilities

Improved roll-out of mandatory training, such as the Oliver McGowan Training, to address diagnostic overshadowing, was another central theme.

However, many respondents wanted staff training to go even further, ensuring that proper consideration is given to support needs at the point of discharge from the hospital to reduce the number of unsafe discharges.

Staff training on pain awareness was also considered crucial, as was treating people holistically rather than just focusing on the ‘one ailment per appointment’ theory. This would help address comorbidities and the connection between learning disabilities, autism, and other physical conditions.

Other areas for staff training included DNACPR (Do Not Attempt Cardiopulmonary Resuscitation), the Mental Capacity Act and best interests, and ensuring that STOMP/STAMP is taken seriously by all.

Annual Health Check

The take-up of annual health checks was unsurprisingly a significant concern for respondents and was seen as an essential method of helping to end premature mortality. Many wanted NICE/SIGN to strengthen its guidance on annual health checks for people with learning disabilities and autistic people.

This means ensuring that people are proactively being offered appointments and chased up if not booked/attended, as people with disabilities are often just a no-show.

One respondent said that these checks also “need to be more meaningful with proper adjustments, follow-up support, and care coordination in place. It’s not enough to do the checks; we need to act on what they show.”

As annual compliance can be an issue, another respondent suggested having regular checkups once a young person turns 25 and then every three years. If any concerns are detected, checkups should be more frequent, either annually or as required. This would help ensure that health conditions do not go undetected.

Postcode lotteries

One respondent also said that the concept of a “postcode lottery” highlights how access to treatment can vary significantly depending on where you live. This disparity can be particularly impactful for individuals with learning disabilities and autism, who often require specialised care and reasonable adjustments.

For example, specific procedures such as blood work using TAP11 or upright MRI may not be available in every healthcare trust. If a trust lacks the necessary equipment or alternative treatment options, there should be a straightforward pathway for patients to access another trust that can meet their needs.

This would help ensure that care is truly centred around the patient, allowing them to receive the fundamental treatments they require.

Next week, we will publish the second article in our series looking at the responses to the following question: What could the sector itself do better to improve health inequality?

 

If you would still like to answer the three questions and join in the campaign, please email the editor: [email protected].