Growing Older with Learning Disabilities - important topics for discussion

In April 2021, the Growing Older with Learning Disabilities (GOLD) Group will talk to leaders in the sector about what we think are the most important issues for people with learning disabilities who are growing older, and those who support them.

The aim of the conversation is to bring these issues to the attention of leaders, particularly those who work in mainstream settings, to ensure people with learning disabilities receive good and equal support as they grow older.

To do this, we need to know what the most pressing issues are. Please fill in the survey below to let us know what you think should be discussed.

This survey is completely anonymous. Data will be stored by Bild Group.

Question Title

Glossary:
Frailty: a person's ability to bounce back and recover from events like illness and injury

Advanced Care Planning: Advance care planning gives people the chance to plan their future care and support, including medical treatment. They are useful for people who have a life-limiting illness or who are at risk of losing their capacity.

Diagnostic Overshadowing: happens when a health professional assumes that the behaviour of a person with learning disabilities is part of their disability without thinking about other things such as illness or pain.

Neurology: the branch of medicine that looks at nerves and the nervous system. Neurologists are specialists in epilepsy.

Social Prescribing: this is a way for local agencies like GPs to refer people to a link worker. Link workers can connect people to community groups and services for practical and emotional support.

Do Not Attempt Cardio Pulmonary Resuscitation (DNACPR): This is a document which says that if your heart stops beating you do not want the Doctors to try and make it start again. They are used when people are nearing the end of their life.

Question Title

* 1. Please rate which topics you think are most important to be discussed at the GOLD round table meeting?

	1 - Least important	2 - A little important	3 - Somewhat important	4 - very important	5 - Most important
Frailty	Frailty 1 - Least important	Frailty 2 - A little important	Frailty 3 - Somewhat important	Frailty 4 - very important	Frailty 5 - Most important
Advanced care planning	Advanced care planning 1 - Least important	Advanced care planning 2 - A little important	Advanced care planning 3 - Somewhat important	Advanced care planning 4 - very important	Advanced care planning 5 - Most important
End of life support	End of life support 1 - Least important	End of life support 2 - A little important	End of life support 3 - Somewhat important	End of life support 4 - very important	End of life support 5 - Most important
Equipment needs, including inequality in getting access	Equipment needs, including inequality in getting access 1 - Least important	Equipment needs, including inequality in getting access 2 - A little important	Equipment needs, including inequality in getting access 3 - Somewhat important	Equipment needs, including inequality in getting access 4 - very important	Equipment needs, including inequality in getting access 5 - Most important
Access to healthcare	Access to healthcare 1 - Least important	Access to healthcare 2 - A little important	Access to healthcare 3 - Somewhat important	Access to healthcare 4 - very important	Access to healthcare 5 - Most important
Diagnostic Overshadowing	Diagnostic Overshadowing 1 - Least important	Diagnostic Overshadowing 2 - A little important	Diagnostic Overshadowing 3 - Somewhat important	Diagnostic Overshadowing 4 - very important	Diagnostic Overshadowing 5 - Most important
Access to epilepsy and neurology specialists	Access to epilepsy and neurology specialists 1 - Least important	Access to epilepsy and neurology specialists 2 - A little important	Access to epilepsy and neurology specialists 3 - Somewhat important	Access to epilepsy and neurology specialists 4 - very important	Access to epilepsy and neurology specialists 5 - Most important
Dementia assessment screening and baseline	Dementia assessment screening and baseline 1 - Least important	Dementia assessment screening and baseline 2 - A little important	Dementia assessment screening and baseline 3 - Somewhat important	Dementia assessment screening and baseline 4 - very important	Dementia assessment screening and baseline 5 - Most important
Experiences of older family carers	Experiences of older family carers 1 - Least important	Experiences of older family carers 2 - A little important	Experiences of older family carers 3 - Somewhat important	Experiences of older family carers 4 - very important	Experiences of older family carers 5 - Most important
Hearing loss	Hearing loss 1 - Least important	Hearing loss 2 - A little important	Hearing loss 3 - Somewhat important	Hearing loss 4 - very important	Hearing loss 5 - Most important
Housing and accommodation, including age limits on types of housing	Housing and accommodation, including age limits on types of housing 1 - Least important	Housing and accommodation, including age limits on types of housing 2 - A little important	Housing and accommodation, including age limits on types of housing 3 - Somewhat important	Housing and accommodation, including age limits on types of housing 4 - very important	Housing and accommodation, including age limits on types of housing 5 - Most important
Cancer diagnosis and access to cancer screening	Cancer diagnosis and access to cancer screening 1 - Least important	Cancer diagnosis and access to cancer screening 2 - A little important	Cancer diagnosis and access to cancer screening 3 - Somewhat important	Cancer diagnosis and access to cancer screening 4 - very important	Cancer diagnosis and access to cancer screening 5 - Most important
Access to social prescribers	Access to social prescribers 1 - Least important	Access to social prescribers 2 - A little important	Access to social prescribers 3 - Somewhat important	Access to social prescribers 4 - very important	Access to social prescribers 5 - Most important
Access to local fall services	Access to local fall services 1 - Least important	Access to local fall services 2 - A little important	Access to local fall services 3 - Somewhat important	Access to local fall services 4 - very important	Access to local fall services 5 - Most important
Including people within black, Asian and minority ethnic communities	Including people within black, Asian and minority ethnic communities 1 - Least important	Including people within black, Asian and minority ethnic communities 2 - A little important	Including people within black, Asian and minority ethnic communities 3 - Somewhat important	Including people within black, Asian and minority ethnic communities 4 - very important	Including people within black, Asian and minority ethnic communities 5 - Most important
Loneliness and isolation	Loneliness and isolation 1 - Least important	Loneliness and isolation 2 - A little important	Loneliness and isolation 3 - Somewhat important	Loneliness and isolation 4 - very important	Loneliness and isolation 5 - Most important
Access to technology and the internet	Access to technology and the internet 1 - Least important	Access to technology and the internet 2 - A little important	Access to technology and the internet 3 - Somewhat important	Access to technology and the internet 4 - very important	Access to technology and the internet 5 - Most important
Use of DNACPR - Do not attempt cardiopulmonary resuscitation	Use of DNACPR - Do not attempt cardiopulmonary resuscitation 1 - Least important	Use of DNACPR - Do not attempt cardiopulmonary resuscitation 2 - A little important	Use of DNACPR - Do not attempt cardiopulmonary resuscitation 3 - Somewhat important	Use of DNACPR - Do not attempt cardiopulmonary resuscitation 4 - very important	Use of DNACPR - Do not attempt cardiopulmonary resuscitation 5 - Most important

Is there anything else that you think is important?

Thank you for your contribution to this survey.