#WeLDNs - Tuesday 18th June 2019 8:30pm (GMT Standard Time) Identifying Anxiety in people with Learning Disabilities

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Hosted by WeLDnurses using #WeLDNs

This chat is guest hosted by @Waite_Aston

Individuals with ID are at heightened risk of experiencing anxiety and depression. However, assessment of mental health problems in individuals with severe Learning Disabilities is more challenging due to difficulties reporting internal states. 

Ongoing work within our team has revealed that increased vocalisation, repetitive behaviour and self-injury are key behavioural markers of anxiety in people with Learning Disabilities and autism. However, these behaviours could also overlap with other behavioural presentations, including when a person is in pain. There are currently no assessment measures with acceptable reliability to identify and differentiate anxiety and depression from pain and autism spectrum characteristics in this population. This may mean that individuals who display challenging behaviour caused by underlying anxiety or pain are being referred into inappropriate services (e.g. challenging behaviour rather than mental or physical health pathways).

In this chat we will discuss:

  • What experience do you have of working with people with LD experiencing anxiety, depression and/or pain?
  • What is the hardest part of detecting mental health problems in people you work with?
  • What training have you had to help you when working with people with possible mental health problems?
  • Have you found any research that you have found useful in informing your practice in this area?

References





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 Chat Summary

 

On Tuesday evening, WeLDNurses hosted a webchat dedicated to the detection of anxiety in people with learning disabilities. A range of individuals joined the chat including nurses, psychologists and students, with a broad range of different experiences. The chat covered topics such as the signs of anxiety, barriers to detection of anxiety, useful tools/assessments for use in a clinical setting and individuals’ reflections on mental health in people with learning disabilities following the Panorama documentary highlighting more cases of abuse. The following themes emerged from the chat:

Subtle changes to a person’s behaviour should not be ignored

There was consensus among participants that change in a person’s behaviour patterns may be something to take notice of because this may indicate a change to the person’s well-being or health status. Several participants in the chat indicated that it was important to know the person well in order to detect these changes. In addition, there was some discussion of anxiety in people with specific genetic syndromes. It was excellent to hear that participants were considering the importance syndrome characteristics, particularly given that research has shown specific genetic syndromes (e.g. fragile X, Williams and Cornelia de Lange syndrome) are at risk for the development of anxiety.

The challenge of detecting anxiety

It was also noted that being able to detect anxiety is challenging in people who have more significant disabilities because these individuals may not be able to describe their internal feelings or label the emotions they are experiencing.In addition, several participants commented that the signs and symptoms of anxiety are difficult to disentangle from other difficulties, such as pain from an undiagnosed health condition, or may simply be labelled as ‘challenging behaviour’.

The barriers to the effective identification of anxiety that were described in the chat included a lack of sufficient understanding or training for staff, poor or inappropriate living environments. The participants felt that the environment around the person can lead to anxiety being overlooked or responded to inappropriately. In the worse cases, as highlighted on the recent Panorama documentary, a person’s anxiety may heightened by inexperienced staff who do not have appropriate training or adhere ethical practices.  

Validated tools for the detection of mental health difficulties

It was encouraging to observe that many participants contributing to the chat had experience of using measures to detect mental health difficulties in people with intellectual disabilities. Many of the tools that were discussed, such as the Glasgow Anxiety Scale, are validated for people with mild to moderate intellectual disabilities and are free to download. Other measures discussed were the Anxiety, Depression and Mood Scale (ADAMS), and Mood, Interest and Pleasure Questionnaire. As the participants of the chat noted that anxiety symptoms can overlap with pain symptoms, there was also a detailed discussion of pain measures, including the DIS-DAT and FLACC. Many participants felt that the FLACC was a useful measure, and some commented that the DIS-DAT has been effective in their work, although less so for assessments conducted over a short timeframe.  It was also encouraging to hear of the use of Wellness Recovery Plans, to guide interventions.

A focus on developing moretraining and resources for LD Nurses

One of the exciting aspects of being part of the WeLDNurses webchat, is to hear about participants plans to do to improve awareness of mental health difficulties in people with learning disabilities. One participant commented that, ‘I’m going to update my LD awareness training for acute staff to include some MH in LD information and signpost to potential assessment tools, in liaison with our acute MH nurses.’ It is clear that coming together on webchats is important for sharing knowledge of good practice and it’s great to hear how that will be put into practice. Our team at Aston University will continue to work on developing measures to detect anxiety and low mood in people with severe to profound intellectual disabilities, and we hope to be able to share our measures with the WeLDNurses network in the not too distant future.

DrJane Waite & Dr Jo Tarver

Recommended resources by the groupincluded:

Cerebra Anxiety Guide. https://www.cerebra.org.uk/help-and-information/guides-for-parents/cerebra-anxiety-guide-guide-parents/

Cerebra Pain Guide. https://www.cerebra.org.uk/help-and-information/guides-for-parents/pain-in-children-with-severe-intellectual-disability-a-guide-for-parents/

The Feeling Down Report. https://www.mentalhealth.org.uk/sites/default/files/feeling-down-report-2014.pdf

Learning Disability Statistics: Mental Health Problems. https://www.mentalhealth.org.uk/learning-disabilities/help-information/learning-disability-statistics-/187699

Mental wellness in people with Down syndrome. https://www.amazon.co.uk/dp/1890627658/ref=cm_sw_r_tw_apa_i_7.tcDbHP3SFVP

Other resources:

Further Inform Genetic Resources (FIND). www.findresources.co.uk

Article on behavioural phenotypes.https://www.sciencedirect.com/science/article/pii/S1751722214000997

Intellectual Disability and Depression - Talking Therapies programme. https://www.e-lfh.org.uk/programmes/intellectual-disability-and-depression-talking-therapies/





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 #WeLDNs transcript

 
@WeLDnurses
18 June 2019 20:30
Welcome to tonight's #weldns chat on anxiety in people with learning disabilities with @Waite_Aston &… https://twitter.com/i/web/status/1141065544793116673
@Waite_Aston
18 June 2019 20:31
@WeLDnurses @JoanneTarver3 Hello. I'm Jane Waite and I'm a clinical psychologist and researcher #WeLDNs
@ross_6479_RNLD
18 June 2019 20:31
RT @WeLDnurses: Welcome to tonight's #weldns chat on anxiety in people with learning disabilities with @Waite_Aston & @JoanneTarver3 Please…
@ross_6479_RNLD
18 June 2019 20:31
@WeLDnurses @Waite_Aston @JoanneTarver3 Hi, Ross here #Waves from an unusually hot Northumberland #weldns
@WeLDnurses
18 June 2019 20:32
If you are bringing evidence to the #weldns chat by way of a reference or a link, please add another hashtag #ebp
@LiamFreeman1991
18 June 2019 20:32
@WeLDnurses @Waite_Aston @JoanneTarver3 Hi, I am Liam from Birmingham studying at university of Wolverhampton #weldns #100yrsRNLD
@ross_6479_RNLD
18 June 2019 20:33
RT @WeLDnurses: If you are bringing evidence to the #weldns chat by way of a reference or a link, please add another hashtag #ebp
@paularich1977
18 June 2019 20:33
@WeLDnurses @Waite_Aston @JoanneTarver3 Hi Paula here from a very wet South Wales #weLDNs
@WeLDnurses
18 June 2019 20:34
#WeLDNs Q1 Almost 4 weeks on from #Panorama what might be the significance of discussing recognition of anxiety in… https://twitter.com/i/web/status/1141066550360674304
@Joanne_H_Tarver
18 June 2019 20:34
@WeLDnurses @Waite_Aston Hi everyone, I'm Jo a post doc researcher in autism and LD #weldns
@paularich1977
18 June 2019 20:35
RT @WeLDnurses: #WeLDNs Q1 Almost 4 weeks on from #Panorama what might be the significance of discussing recognition of anxiety in people w…
@PDarigan
18 June 2019 20:36
RT @WeLDnurses: Welcome to tonight's #weldns chat on anxiety in people with learning disabilities with @Waite_Aston & @JoanneTarver3 Please…
@helenglais
18 June 2019 20:37
RT @WeLDnurses: #WeLDNs Q1 Almost 4 weeks on from #Panorama what might be the significance of discussing recognition of anxiety in people w…
@ross_6479_RNLD
18 June 2019 20:37
RT @WeLDnurses: #WeLDNs Q1 Almost 4 weeks on from #Panorama what might be the significance of discussing recognition of anxiety in people w…
@paularich1977
18 June 2019 20:39
@WeLDnurses Signs of anxiety could be due to abuse occurring. #weldns
@HurrenGillian
18 June 2019 20:39
#weldns
@CommunityLd
18 June 2019 20:40
@LiamFreeman1991 @WeLDnurses Glasgow Anxiety scale amongst others is effective in mild LD but may need adapting for other levels #weLDNs
@Joanne_H_Tarver
18 June 2019 20:41
@LiamFreeman1991 @WeLDnurses we are working on this at the moment! #weldns
@CommunityLd
18 June 2019 20:41
#weldns @WeLDnurses
@LiamFreeman1991
18 June 2019 20:42
@CommunityLd @WeLDnurses ooh, I need to research this one then, thanks #weLDNS
@LiamFreeman1991
18 June 2019 20:42
@JoanneTarver3 @WeLDnurses that is amazing! #weldns
@HurrenGillian
18 June 2019 20:43
@paularich1977 @WeLDnurses Or lack of skilled and appropriate support, poor care , not a capable environment #weldns
@WeLDnurses
18 June 2019 20:44
#WeLDNs Q2 What experiences do you have of working with people with learning disabilities experiencing anxiety, depression and/or pain?
@HurrenGillian
18 June 2019 20:44
@LiamFreeman1991 @CommunityLd @WeLDnurses You can Google accessible Glasgow scale - it's there! #ebp #weldns
@CommunityLd
18 June 2019 20:44
@WeLDnurses I've done adapted CBT interventions with people with a mild or moderate LD #weldns
@paularich1977
18 June 2019 20:46
RT @CommunityLd: @WeLDnurses I've done adapted CBT interventions with people with a mild or moderate LD #weldns
@HurrenGillian
18 June 2019 20:47
@WeLDnurses Lots of anxiety in people with down syndrome- get lots of referrals about this.#WeLDNs
@dmarsden49
18 June 2019 20:47
RT @paularich1977: @WeLDnurses Signs of anxiety could be due to abuse occurring. #weldns
@dmarsden49
18 June 2019 20:47
RT @HurrenGillian: #weldns https://twitter.com/HurrenGillian/status/1141067816440860675
@LiamFreeman1991
18 June 2019 20:47
@WeLDnurses I have asked them to talk about their emotions or use some sensory equipment to help them manage their emotions #weldns
@salsa442
18 June 2019 20:48
Hi all, very late to the chat but I’ve made it! Playing catch up now #WeLDNs
@ross_6479_RNLD
18 June 2019 20:48
RT @WeLDnurses: #WeLDNs Q2 What experiences do you have of working with people with learning disabilities experiencing anxiety, depression…
@WeLDnurses
18 June 2019 20:49
@CommunityLd @LiamFreeman1991 Is there a link you could share? #weldns #ebp
@WeLDnurses
18 June 2019 20:49
RT @CommunityLd: #weldns @WeLDnurses https://twitter.com/communityld/status/1141068457435369472
@HurrenGillian
18 June 2019 20:49
#weldns #ebp Thoroughly recommend this for understanding anxiety and presentation in DS Mental Wellness in Adul… https://twitter.com/i/web/status/1141070488065728512
@CommunityLd
18 June 2019 20:49
@Waite_Aston @WeLDnurses Absolutely especially when a person may not be able to recognise anxiety or the feeling of such #weldns
@CommunityLd
18 June 2019 20:50
@WeLDnurses @LiamFreeman1991 https://onlinelibrary.wiley.com/doi/pdf/10.1046/j.1365-2788.2003.00457.x #weldns #ebp
@katblossom
18 June 2019 20:51
RT @WeLDnurses: #WeLDNs Q2 What experiences do you have of working with people with learning disabilities experiencing anxiety, depression…
@WeLDnurses
18 June 2019 20:52
@CommunityLd @LiamFreeman1991 Thanks for sharing this Glenn! #weldns
@ross_6479_RNLD
18 June 2019 20:52
RT @HurrenGillian: #weldns #ebp Thoroughly recommend this for understanding anxiety and presentation in DS Mental Wellness in Adults wi…
@WeLDnurses
18 June 2019 20:52
@helenglais Don't forget to use the #weldns hashtag, otherwise your messages won't be recorded!
@WeLDnurses
18 June 2019 20:53
@Tracey_Lloyd3 Welcome Tracey, don't forget to use the hashtag #weldns, otherwise your contributions will get lost.
@WeLDnurses
18 June 2019 20:54
@salsa442 Welcome Sal, glad you could join us! #weldns
@CommunityLd
18 June 2019 20:54
@WeLDnurses just seen this on an Emotional Health forum #weldns https://t.co/acSVvUnanv
@WeLDnurses
18 June 2019 20:54
RT @HurrenGillian: #weldns #ebp Thoroughly recommend this for understanding anxiety and presentation in DS Mental Wellness in Adults wi…
@WeLDnurses
18 June 2019 20:55
RT @CommunityLd: @WeLDnurses @LiamFreeman1991 https://t.co/t1EQNwDbWO #weldns #ebp
@salsa442
18 June 2019 20:55
RT @CommunityLd: @WeLDnurses just seen this on an Emotional Health forum #weldns https://t.co/acSVvUnanv
@WeLDnurses
18 June 2019 20:55
Has anyone got any experience of using these? #weldns
@salsa442
18 June 2019 20:56
@CommunityLd @WeLDnurses Fab, thanks for sharing this, there’s so much we can do to support people #WeLDNs
@WeLDnurses
18 June 2019 20:56
RT @CommunityLd: @WeLDnurses just seen this on an Emotional Health forum #weldns https://t.co/acSVvUnanv
@HurrenGillian
18 June 2019 20:56
RT @CommunityLd: @WeLDnurses just seen this on an Emotional Health forum #weldns https://t.co/acSVvUnanv
@helenglais
18 June 2019 20:56
@JoanneTarver3 @WeLDnurses Reasonable adjustments can be small things that can make a big difference #WeLDNs
@WeLDnurses
18 June 2019 20:57
#WeLDNs Q3 How do you detect mental health problems in people you work with?
@salsa442
18 June 2019 20:57
Yes, I’ve always been a big fan of the DisDAT - very useful to identify any change which could indicate pain #WeLDNs
@ross_6479_RNLD
18 June 2019 20:57
RT @WeLDnurses: #WeLDNs Q3 How do you detect mental health problems in people you work with?
@LiamFreeman1991
18 June 2019 20:57
RT @CommunityLd: @WeLDnurses just seen this on an Emotional Health forum #weldns https://t.co/acSVvUnanv
@CommunityLd
18 June 2019 20:58
@WeLDnurses A good adapted mental state examination and documented in a Wellness Recovery Action Plan #Weldns
@LucyAnn_Spencer
18 June 2019 20:59
@WeLDnurses When it could actually be behaviours around experiencing pain. #WeLDNs
@salsa442
18 June 2019 20:59
RT @CommunityLd: @WeLDnurses A good adapted mental state examination and documented in a Wellness Recovery Action Plan #Weldns
@salsa442
18 June 2019 21:00
RT @dmarsden49: @WeLDnurses Yes, in a previous role we adapted the FLACC for a Hospital setting, also the @FoNScharity project #weldns #ebp…
@dmarsden49
18 June 2019 21:00
@WeLDnurses We found DIS-DAT impractical to start in short episodes of care. #weldns
@salsa442
18 June 2019 21:00
@HabitualJoshing @WeLDnurses Glad I’m not the only latecomer Josh ?? #WeLDNs
@HabitualJoshing
18 June 2019 21:00
Agreed #weldns
@WeLDnurses
18 June 2019 21:02
RT @dmarsden49: @WeLDnurses Yes, in a previous role we adapted the FLACC for a Hospital setting, also the @FoNScharity project #weldns #ebp…
@HabitualJoshing
18 June 2019 21:02
@hayleyldnurse @WeLDnurses Carers, particularly family, are always the first to recognise those subtle early changes #WeLDNs
@CommunityLd
18 June 2019 21:03
@salsa442 @WeLDnurses Understanding of stress vulnerability is also important #WeLDNs
@WeLDnurses
18 June 2019 21:03
@Tracey_Lloyd3 Don't forget to use the #weldns hashtag!
@Tracey_Lloyd3
18 June 2019 21:04
RT @HurrenGillian: #weldns #ebp Thoroughly recommend this for understanding anxiety and presentation in DS Mental Wellness in Adults wi…
@WeLDnurses
18 June 2019 21:05
@Tracey_Lloyd3 @CommunityLd Don't forget to use the #weldns hashtag!
@WeLDnurses
18 June 2019 21:06
#WeLDNs Q4 In your experience are there any barriers to identifying mental health issues in the people you work with?
@ross_6479_RNLD
18 June 2019 21:06
RT @WeLDnurses: #WeLDNs Q4 In your experience are there any barriers to identifying mental health issues in the people you work with?
@CommunityLd
18 June 2019 21:07
@Tracey_Lloyd3 @WeLDnurses I'm not in practice atm but my old Trust had a version they used #weldns
@salsa442
18 June 2019 21:08
@RhiannonJames22 @WeLDnurses I’ve come across that too, it can be very challenging to identify EWS in people with profound LD #WeLDNs
@hayleyldnurse
18 June 2019 21:09
@WeLDnurses The assumption that everyone's mental health difficulties manifest in exactly the same way #weLDNs
@CommunityLd
18 June 2019 21:10
@WeLDnurses Diagnostic overshadowing where mental health issues are attributed to behaviour #weldns
@salsa442
18 June 2019 21:12
RT @CommunityLd: @WeLDnurses Diagnostic overshadowing where mental health issues are attributed to behaviour #weldns
@salsa442
18 June 2019 21:13
Fab #EBP from @HabitualJoshing #WeLDNs
@Waite_Aston
18 June 2019 21:13
@LiamFreeman1991 @WeLDnurses There are definitely some good professionals out there! #WeLDNs
@LiamFreeman1991
18 June 2019 21:14
@Waite_Aston @WeLDnurses Definitely is! Just need more of them #weldns
@WeLDnurses
18 June 2019 21:15
#WeLDNs Q5 What education and training have you had to help you when working with people with possible mental health problems?
@HabitualJoshing
18 June 2019 21:15
Here’s the report that goes with it #weldns https://www.mentalhealth.org.uk/sites/default/files/feeling-down-report-2014.pdf
@WeLDnurses
18 June 2019 21:15
@Tracey_Lloyd3 Tracey, we are missing a lots of your really valuable tweets because they are missing the hashtag #weldns
@mhldnurse_amy
18 June 2019 21:15
@WeLDnurses Low rates of staff supervision. Look after your staff and they will be more effective in their role. #weLDNS
@ross_6479_RNLD
18 June 2019 21:15
RT @WeLDnurses: #WeLDNs Q5 What education and training have you had to help you when working with people with possible mental health proble…
@WeLDnurses
18 June 2019 21:15
RT @LiamFreeman1991: @Waite_Aston @WeLDnurses Definitely is! Just need more of them #weldns
@WeLDnurses
18 June 2019 21:16
RT @HabitualJoshing: Here’s the report that goes with it #weldns https://www.mentalhealth.org.uk/sites/default/files/feeling-down-report-2014.pdf https://twitter.com/salsa442/status/1141076530266869760
@WeLDnurses
18 June 2019 21:18
@antgreen2011 @ProfRHastings Is there a reference? @antgreen2011 #weldns #ebp
@CommunityLd
18 June 2019 21:19
@WeLDnurses On the positive side, services such as liaison psychiatry and employing LD nurses and offering student placements #weldns
@WeLDnurses
18 June 2019 21:21
#WeLDNs Q6 Have you found any research that you have found useful in informing your practice in this area?
@salsa442
18 June 2019 21:22
@Waite_Aston @WeLDnurses Always stay curious! #WeLDNs
@CommunityLd
18 June 2019 21:22
@salsa442 @HabitualJoshing @WeLDnurses @sunderlanduni Mental state examination is a basic tool all nurses should be able to conduct #weldns
@ross_6479_RNLD
18 June 2019 21:22
RT @WeLDnurses: #WeLDNs Q6 Have you found any research that you have found useful in informing your practice in this area?
@WeLDnurses
18 June 2019 21:22
@helenglais Don't forget to use the #weldns hashtag!
@CommunityLd
18 June 2019 21:22
@ross_6479_RNLD @WeLDnurses @sunderlanduni What's your new role mate? #weldns
@salsa442
18 June 2019 21:23
RT @WeLDnurses: #WeLDNs Q6 Have you found any research that you have found useful in informing your practice in this area?
@ross_6479_RNLD
18 June 2019 21:24
@CommunityLd @WeLDnurses @sunderlanduni I’m working as a specialist nurse in PBS and developing into NMP role #weldns :)
@salsa442
18 June 2019 21:24
@WeLDnurses https://www.mentalhealth.org.uk/learning-disabilities/help-information/learning-disability-statistics-/187699 #EBP #WeLDNs
@WeLDnurses
18 June 2019 21:24
@ross_6479_RNLD @CommunityLd @sunderlanduni Congratulations on this! #weldns
@WeLDnurses
18 June 2019 21:25
#WeLDNs Q7 In the context of #panorama, and based on this conversation, is there somethig that you might do differe… https://twitter.com/i/web/status/1141079385291874304
@WeLDnurses
18 June 2019 21:25
RT @salsa442: @WeLDnurses https://www.mentalhealth.org.uk/learning-disabilities/help-information/learning-disability-statistics-/187699 #EBP #WeLDNs
@salsa442
18 June 2019 21:25
@CommunityLd @HabitualJoshing @WeLDnurses @sunderlanduni @cj_dinenage So do I #WeLDNs
@HabitualJoshing
18 June 2019 21:25
@salsa442 @CommunityLd @WeLDnurses @sunderlanduni That’s where having tools to ask carers can also help #WeLDNs
@ross_6479_RNLD
18 June 2019 21:26
@CommunityLd @WeLDnurses @sunderlanduni Thanks ?? #WeLDns
@LiamFreeman1991
18 June 2019 21:26
@ross_6479_RNLD @CommunityLd @WeLDnurses @sunderlanduni Amazing work #weldns
@salsa442
18 June 2019 21:27
RT @WeLDnurses: #WeLDNs Q7 In the context of #panorama, and based on this conversation, is there somethig that you might do different in yo…
@ross_6479_RNLD
18 June 2019 21:28
@LiamFreeman1991 @CommunityLd @WeLDnurses @sunderlanduni Plan is to develop local STOMP agenda alongside specialist pharmacist :) #weldns
@Tracey_Lloyd3
18 June 2019 21:29
@WeLDnurses #WeLDNs we used @USWCareSciences event today for #100yrsRNLD to gather opinions. Early results indicate… https://t.co/skwyzNKdNm
@salsa442
18 June 2019 21:29
@CommunityLd @WeLDnurses If only I didn’t have a dissertation to write... #WeLDNs




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