Key conditions that cause health inequalities for people with a learning disability

Respiratory conditions

A respiratory condition is when you have a problem with your lungs and breathing – this includes aspiration pneumonia and bacterial pneumonia. Pneumonia is a common cause of death in people with a learning disability.

To stop people with a learning disability dying from pneumonia we have:

  • worked with other organisations to make sure that people with a learning disability, their families and carers can get a free flu vaccine and information on why it is so important. This includes producing easy read information about flu
  • worked with an organisation called the British Thoracic Society to help us write advice to help make sure that doctors know the best way to care for someone with a learning disability who has pneumonia
  • worked with NHS RightCare to produce information to help people understand how they should be managing aspiration pneumonia. This provides guidance on what good care should look like and compares it to what happens if things go wrong. It also supports health systems to understand the key actions to take and includes information about education and training for staff as well as practical advice and guidance.

Epilepsy

The RightCare epilepsy toolkit supports health systems to understand the priorities in epilepsy care and key actions to take. It includes information about education and training for staff as well as practical advice and guidance on caring for people with a learning disability who have epilepsy.

Deaths of people from minority ethnic communities

We know from LeDeR reviews that we need to do more work on the deaths of adults and children from minority ethnic groups.

ICB LeDeR governance groups are expected to identify a lead to ensure there is a focus on the deaths of people with a learning disability and autistic people from ethnic minority ethnic communities

In June 2023 the Race Health Observatory published a report called We deserve better which showed the intersectionality between ethnicity and learning disability.

Constipation

Constipation is having problems with pooing.

We know from reviews that too many people with a learning disability are dying from constipation.

We have developed a set of resources to help people understand more about constipation and how to prevent, recognise and treat it.

We worked with an organisation called Books Beyond Words to make a book called ‘The trouble with poo’ to support people with a learning disability to improve their understanding of the risks of constipation and to know when to get help.

Do not attempt cardiopulmonary resuscitation (DNACPR)

It very important that people are supported to talk about what they want and need if they become seriously ill and reach the end of their life. Some people will need reasonable adjustments to be able to do this.

What people want and need should be recorded and shared. This might be in an ‘advance care plan’. Sometimes making an advance care plan includes thinking about and making a do not attempt cardiopulmonary resuscitation (DNACPR) decision. This might happen with a doctor or nurse who knows the person well.

We have always been clear that people should not have a DNACPR on their record just because they have a learning disability or are autistic. This is unacceptable. Every person has individual needs and preferences which must be taken account of, and they should always get good standards and quality of care.

In April 2020 senior leaders from NHS England and NHS Improvement sent a joint letter to health staff to remind them of this. A joint statement from NHS England and NHS Improvement (now part of NHS England) and Baroness Campbell in May 2020 showed the importance of decisions around care and access to treatment, being made on an individual basis and that blanket decision making is never acceptable. Blanket decision means making a decision about a group of people at the same time because they have similar characteristics like having a learning disability or are autistic.

If you have any concerns about a DNACPR on your medical record, you should talk to the doctor involved. If you are still concerned, you, your family, carer or advocate may wish to make a complaint. More information on how to make a complaint is available on the nhs.uk website. You might also find the Ask Listen Do web pages helpful.

Learning Disability England and Turning Point have also been developing resources about DNACPRs for people with a learning disability, their families and support staff.

Spotting the signs of deterioration

  • RESTORE2 is a physical deterioration and escalation tool for care and nursing homes to support them to identify when a person is becoming more unwell.

Restore2 mini project

The Restore2 mini project was set up to help carers and families to spot when someone they care for with a learning disability is unwell. The project aimed to improve identification of ‘early warning signs’ to ensure health concerns of people with a learning disability are taken seriously and help healthcare professionals quickly respond to concerns.

The project introduced a ‘train the trainer’ programme, working with third sector partners. By the end of May 2021 more than 7,000 paid and unpaid carers had been trained in Restore2 mini. This tool has been adapted from Restore2, an award-winning tool to recognise the soft signs of physical deterioration and to improve communication between carers, healthcare staff and GPs, for use with people with a learning disability.

A task and finish group, chaired by a person with a learning disability, worked with learning disability charities and the West of England and Wessex Academic Health Science Network to ensure the project was delivered. Health Education England (HEE) and lived experience representatives were also integral to the development of materials and delivering the training. Due to the project’s success some partners are now including this training in their induction training for all new care staff, and the Down’s Syndrome Association plans to offer it to family carers in their network.

All of the resources about Restore2 mini are available on the Skills4Care website and are free.

Carers discussing the training they received with a University of Northumbria researcher

“As we are carers what we can’t do is attend distance training, go to exhibitions, travel, etc. It was the first time that training came to us. Now there is a way of understanding what we need to help us fulfil our caring role”.

“This course was so useful – I can’t stop recommending it to friends and family”.

A carer discussing how they’re using the training they received with a University of Northumbria researcher

“Every time I have somebody new on my caseload…I do a Restore2 now, and I ensure that…the carers know their soft signs. And I escalate it to the GP. And say, “I’ve done these Restore2 documents” so that you know if somebody is deteriorating”.

Films

Mental Capacity Act

In May 2025 resources to support implementation of the Mental Capacity Act were published.

The guidance aims to support trusts and community providers in enabling frontline staff to fulfil their legal requirements under the Mental Capacity Act 2005, specifically when supporting people with a learning disability.

Useful resources

We have developed a list of useful guidance for health and care staff, people with a learning disability, autistic people and families and carers.

Do not attempt cardiopulmonary resuscitation (DNACPR)

Reasonable adjustments

LeDeR resource bank

In addition to the resources contained on this page we have developed an online LeDeR Resource Bank for health and care staff which includes resources on tackling health inequalities and resources on conditions including cancer, cardiovascular health, dementia, diabetes, end of life care, constipation, epilepsy and respiratory and identifying deterioration. These include links to guidance, training, easy read materials, films and reports.