Ideas forum: response from Down’s Syndrome Association

What changes to NICE/SIGN guidance would you like to see?

When NICE guidance is issued there could be an additional section (universally adopted across all NICE documents) that details ways in which an intended audience needs to consider how the guidance specifically relates to people have a learning disability. This could include examples of reasonable adjustments that may need to be made for the learning disabled population.

The Down’s Syndrome Association believes that it would be useful to have a NICE endorsed guideline that is based upon the Down’s Syndrome Medical Interest Group‘s basic medical surveillance for people who have Down’s syndrome Guidance for Essential Medical Surveillance – DSMIG. Being NICE endorsed would give this existing document far greater impetus.

We also recommend the introduction of a NICE guideline for dementia and learning disability that adopts the British Psychological Society good practice guidance, ensuring that baseline assessments of cognition should be carried out for all people who have Down’s syndrome by the age of 30. See Dementia and people with learning difficultiies.

What could the sector itself do better to improve health inequality?

The sector should expand on training delivery that focuses on strategies to address health inequalities. This should be at i) undergraduate or initial training for medics, nurses and allied health professionals and ii) as part of an individual’s continuing professional development.

There should be closer work with partners including the NHS, Royal Colleges, the LeDeR programme and DHSC in existing strategies that explicitely seeks to tackle health inequities.

There needs to be information that is regularly shared with people who have a learning disability and their families about how to keep healthy (this should always include the provision of Easy Read materials).

Information should also be shared about how to seek help if unwell and how to raise a complaint if access to healthcare has been unsatisfactory (again, this should always include Easy Read materials).

The sector can help to promote recognised DHSC training and awareness resources including:

• The Restore2Mini training for carers on spotting when who has a learning disability is becoming unwell and how to get help.
• The Oliver McGowan mandatory learning disability awareness trainingThe Oliver McGowan Mandatory Training on Learning Disability and Autism | NHS England | Workforce, training and education
• The Down’s Syndrome Association’s Listen, Include, Respect training Inclusive participation – Downs Syndrome Association

We believe there needs to be greater investment in more Community Learning Disability Nurses.

The sector could also share best practice in relation to how different areas have improved their uptake of NHS screening services for people who have a learning disability, including:

• Bowel Cancer Screening
• Breast Screening
• Cervical Screening
• Abdominal Aortic Aneurysm (AAA) Screening
• Diabetic Eye Screening

It is necessary to consider offering the above programmes to people who have a learning disability at a younger age than the general population, as many people who have Down’s syndrome, for example, experience health conditions associated with ageing at a younger age.

Do you have any other ideas or innovative solutions to help prevent preventable deaths?

• Expand awareness of the NHS Learning Disability Reasonable Adjustment Digital Flag Reasonable Adjustment Flag – NHS England Digital
• Make Martha’s Rule mandatory in all hospital settings in the UK NHS England » Martha’s Rule
• Consider giving people who have a learning disability to always have access to a named GP, to ensure continuity of care.
• Improve Mental Capacity Act training for key health professionals – this is especially important for paramedics
• Improve the way in which Accessible Information Standard operates in NHS settings – we believe it is currently done very poorly NHS England » Accessible Information Standard

Downs Syndrome Association

The Down’s Syndrome Association supports people who have Down’s syndrome, and their parents and carers, throughout their lives. From before birth into older age, the DSA provides services to everyone.

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