About Learning from lives and deaths – people with a learning disability and autistic people (LeDeR)
LeDeR is a service improvement programme for people with a learning disability and autistic people.
LeDeR works to improve care, reduce health inequalities and prevent avoidable deaths in people with a learning disability and autistic people.
Visit the LeDeR section of the NHS England website to find out more about this work.
1.1 About the campaign
Constipation can be a life–threatening issue for people with a learning disability who are at heightened risk from complications if it is left untreated.
In fact, 23% of people with a learning disability who died in 2019 had constipation as a long-term condition [LeDeR annual report 2019].
People with a learning disability may also be less likely to recognise the symptoms of constipation and be able to communicate their symptoms [LeDeR annual report 2019], increasing the risk of serious consequences.
This campaign supports people with a learning disability, their carers and people who work in primary care.
About this toolkit and the campaign assets
As part of the campaign a suite of resources have been created to support each audience. Resources have been co–created with input from the Down’s Syndrome Association, Mencap and Pathways Associates to ensure that they are fit for purpose.
The resources aim to:
- drive awareness of the seriousness of constipation
- help people recognise the signs of constipation at an early stage
- empower people to take action and ensure that people with a learning disability experiencing constipation get the right health support straight away
- raise awareness of the steps which can be taken to prevent constipation.
The resources are designed to be printed and used in home or care settings, facilitating conversations about constipation, and hopefully leading to swift treatment and improved outcomes for those people with a learning disability who are experiencing constipation.
This toolkit has been developed to introduce you to the resources available and provide guidance on how they can be used to help prevent, recognise and treat constipation in people with a learning disability.
1.2 How you can support the campaign
To ensure the campaign is a success we need our partners’ support to help spread awareness and use of the resources amongst our core audiences.
If you are an organisation who supports or has a relationship with any of the following audiences, then you have an opportunity to support the campaign by sharing and promoting the assets on your channels:
- people with a learning disability
- carers for people with a learning disability (paid or unpaid)
- pharmacy teams or general practice teams.
You could support the campaign by:
- hosting the resources on your website
- sharing the resources on your social media channels
- printing and distributing assets to your staff or displaying them in relevant settings
- sending the resources to anyone you think would benefit from using them.
2.1 Assets for people with a learning disability
These assets are available to download from the NHS England website.
Print assets
These assets have been co–created with people who have lived experience to help others with a learning disability prevent, recognise, and treat constipation.
All assets can be downloaded from the NHS England website. You could also host or embed the assets on your website for people to download and use.
A4 poster
This poster can be printed off and displayed in a care setting or home to help remind people of the key signs of constipation and what they should do if they are experiencing any of them. Before putting up the poster please use it as the basis for a conversation with anyone living in the setting and check they feel comfortable with it being displayed.
Easy read leaflet
This easy read leaflet can be printed and handed out to people or made available in relevant care settings. It explains the key signs of constipation, what to do if you are experiencing them, and the steps you can take to prevent constipation.
Bristol Stool Chart
The Bristol Stool Chart is a visual aid which can help stimulate conversations about healthy poo and enable someone to identify if they are experiencing constipation. The chart can be printed off and made available to people with a learning disability.
Animation
This animation can be used to help explain the signs of constipation and the importance of getting the right help. It can be used with people who prefer to receive information in an audio–visual format. You can upload the video to your own site, or embed it from NHS England’s YouTube channel.
Social media image posts and template copy
These social media images and post copy can be used on your social media channels. They are available in the correct formats for Twitter, Instagram and Facebook.
These assets are intended for use on social media channels that are specifically aimed at people with a learning disability rather than those with a wider, mixed audience.
Option 1 post copy
Do you get a sore tummy when you try to poo? Is your poo too hard or too runny, or are you pooing less than usual? It could be constipation. Tell someone you trust, like a family member or carer.
Option 2 post copy
Are your poos too hard, too runny or is it sore to poo? It could be constipation. If you’re worried about your poos, tell someone you trust, like a family member or carer.
Template editorial copy
Use the copy below to raise awareness of the resources and encourage use amongst people with a learning disability or those that support them. The copy can be used on e-bulletins, websites or in other communications, including emails and newsletters. The copy can be adapted to be made more specific to your audience.
Find out more about constipation
The NHS has created a poster, leaflet and animation to tell people with a learning disability about constipation.
Constipation is when someone finds it hard to poo or poos less often than usual.
If someone is constipated, they need to get help to make sure they don’t get ill.
The resources tell people the signs of constipation and what they should do if they have it.
2.2 Assets for carers
These assets are available to download from the NHS England website.
Print assets
These print assets have been developed to help support carers of people with a learning disability in having conversations about constipation with those they care for.
They could be printed off and handed out, or emailed to people who may find them useful.
A4 posters
These posters can be printed off and displayed in a staff setting to remind people that constipation is an important issue, and they will need to take action if anyone they are caring for is experiencing it.
A4 leaflet
This leaflet provides more detailed information on the signs of constipation and the steps you should take to support someone with a learning disability if they are experiencing it.
Bristol Stool Chart
The Bristol Stool Chart is a visual aid which can help stimulate conversations about healthy poo and enable someone to identify if they are experiencing constipation. The chart can be printed off and made available to carers for use in the settings which they work in.
Remember, conversations about poo can be sensitive so it’s important to consider whether the person you are speaking to is comfortable discussing this topic with you.
Social media image posts and template copy
These social media images and post copy can be used on your social media channels. They are available in the correct formats for Twitter, Instagram, and Facebook.
Option 1 post copy
If you care for someone with a learning disability, you need to know about constipation. It can kill if it’s not treated. You could save lives by knowing the signs and what to do. Find out more and get free materials to help you: www.england.nhs.uk/publication/constipation-resources-for-carers/
Option 2 post copy
If you care for someone with a learning disability, you can help keep them safe and healthy. Talk to them about the signs of constipation, get them medical support if necessary. Find out more and get free materials to help you: www.england.nhs.uk/publication/constipation-resources-for-carers/
Template editorial copy
Use this copy to raise awareness of the resources and encourage use amongst those who support people with a learning disability. The copy can be used on e-bulletins, websites or in other communications, including emails and newsletters. The copy can be adapted to be made more specific to your audience.
What you need to know about constipation
People with a learning disability are much more likely to experience constipation, and to have their symptoms overlooked.
If you care for someone with a learning disability, help them avoid the serious consequences of constipation by making sure they know the signs and know to tell someone they trust.
The NHS has developed a new set of resources to help you discuss constipation with those you care for.
Web images
These images are available to use across your channels to raise awareness of the campaign resources.
2.3 Assets for primary care teams – General Practice team
As the first point of contact when people with a learning disability or their carers are seeking medical support, primary care teams, such as general practice teams and pharmacy teams, have an important role to play in ensuring that they access treatment in a timely manner.
These assets, available to download from the NHS England website, can help drive awareness of the fact that constipation can be more serious for people with a learning disability and support conversations about the treatment which might be required.
Social media image posts and template copy
These social media images and post copy can be used on your social media channels. They are available in the correct formats for Twitter, Instagram, and Facebook.
Option 1 post copy
Constipation for people with a learning disability can be fatal if it’s not treated. To avoid preventable deaths, make sure people with a learning disability presenting with symptoms of constipation are seen by their general practice team.
Option 2 post copy
People with a learning disability are at greater risk of fatal complications caused by untreated constipation. Help them get seen promptly by the general practice team to avoid preventable deaths.
Template editorial copy
This editorial copy can be used in e-bulletins, on websites or other channels including emails and newsletters. The copy can be adapted to be made more specific to your audience.
General practice team: shorter version
Ensure people with a learning disability get treated for constipation.
Constipation can cause fatal complications if it’s not treated promptly – and people with a learning disability are much more likely to be at risk.
You have a vital role to play in avoiding preventable deaths. It is important that people with a learning disability receive support from the general practice team if they are experiencing constipation.
For more information and resources to support conversations with people with a learning disability please direct people to www.england.nhs.uk/publication/constipation-campaign-toolkit/
General practice team: longer version
Ensure people with a learning disability get treated for constipation.
Constipation can cause fatal complications if it’s not treated – and people with a learning disability are much more likely to be at risk.
You have a vital role to play by ensuring that patients with a learning disability who present with constipation receive support from the general practice team. This can help avoid preventable deaths.
Please note that some people with a learning disability or their carers may not have identified that they are experiencing constipation before presenting. Instead, they may present with symptoms such as stomach pain or report changes in behaviour such as agitation or eating less. It’s important to consider that these may be signs of constipation and act accordingly.
For more information and resources to support conversations with people with a learning disability please direct people to www.england.nhs.uk/publication/constipation-campaign-toolkit/
Email copy
Ensure people with a learning disability get treated for constipation.
Constipation can cause fatal complications if it’s not treated promptly – and people with a learning disability are much more likely to be at risk.
That’s why LeDeR, the NHS service improvement programme for people with a learning disability and autistic people, have launched a campaign to help people with a learning disability and their carers to recognise the signs and act promptly.
In support of the campaign, you can play a vital role in helping to avoid preventable deaths.
It is important that people with a learning disability receive support from their general practice team if they are experiencing constipation.
Please note that some people with a learning disability or their carers may not have identified that they are experiencing constipation before presenting. Instead, they may present with symptoms such as stomach pain or report changes in behaviour such as agitation or eating less. It’s important to consider that these may be signs of constipation and act accordingly.
For more information and resources to support conversations with people with a learning disability please direct people to www.england.nhs.uk/publication/constipation-campaign-toolkit/
2.4 Assets for primary care teams – Pharmacy team
Template editorial copy
This editorial copy can be used in e-bulletins, on websites or other channels including emails and newsletters. The copy can be adapted to be made more specific to your audience.
Pharmacy team: shorter version
Constipation is more serious for people with a learning disability.
Constipation can cause fatal complications if it’s not treated – and people with a learning disability are much more likely to be at risk.
You have a vital role to play in avoiding preventable deaths. Before recommending over the counter constipation medication to a person with a learning disability or their carer, you should check that they have contacted their GP surgery. If they haven’t, advise them that they should do so.
For more information and resources to support conversations with people with a learning disability please direct people to www.england.nhs.uk/publication/constipation-campaign-toolkit/
Pharmacy team: longer version
Constipation is more serious for people with a learning disability.
Constipation can cause fatal complications if it’s not treated – and people with a learning disability are much more likely to be at risk.
You have a vital role to play in avoiding preventable deaths. People with a learning disability who are experiencing constipation should contact their GP surgery for medical support.
So before recommending over the counter constipation medication to a person with a learning disability or their carer, you should check that they have contacted their GP surgery. If they haven’t, advise them that they should do so.
For more information and resources to support conversations with people with a learning disability please direct people to www.england.nhs.uk/publication/constipation-campaign-toolkit/
Email copy
Constipation is more serious for people with a learning disability.
Constipation can cause fatal complications if it’s not treated – and people with a learning disability are much more likely to be at risk.
That’s why LeDeR, the NHS service improvement programme for people with a learning disability and autistic people, have launched a campaign to help people with a learning disability and their carers to recognise the signs and act promptly.
In support of the campaign, you can play a vital role in helping to avoid preventable deaths.
People with a learning disability who are experiencing constipation should contact their GP surgery for medical support.
So before recommending over the counter constipation medication to a person with a learning disability or their carer, you should check that they have contacted their GP surgery. If they haven’t, advise them that they should do so.
For more information and resources to support conversations with people with a learning disability please direct people to www.england.nhs.uk/publication/constipation-campaign-toolkit/
3.1 Useful links
You can find more useful information and resources about constipation at the following links:
- The nhs.uk constipation webpage provides more information about the condition.
- Guts UK provides additional information about the condition.
- NHS Leaflets developed for families and carers, health professionals and people with a learning disability.
- Gov.uk provides guidance on constipation in people with a learning disability.
- NICE guidelines on the management of constipation in adults.
Thank you for your support
With your help we can help to improve outcomes for those people experiencing constipation.
Please make use of the assets included in this toolkit and share them with all those who may find it useful.
We would love to hear more about what you have done to support the campaign or where you have used the resources, so please contact us to share any details on england.lederprogramme@nhs.net