Core Values and Principles

The North East and Cumbria Learning Disability Network brought together health and care professionals from across the region to develop the learning disability dysphagia diamond standards.

The aims of this work is to:

Upskill both the workforce and family carers
Provide adjusted pathways
Signpost to workforce education option(s)
Provide resources and information to support and provide high quality care for people with dysphagia
Reduce the number of avoidable deaths from aspiration pneumonia in our region

The pathways include:

Hospital pathways for adults and children and young people
Community pathways for primary care, social care and families and carers
The aim of the standards is to upskill both the workforce and family carers, providing pathways, resources, education and information to support and provide high quality care for people with dysphagia.

We worked with Community Voluntary Sector Organisations and spoke to people with a learning disability across North East North Cumbria. They told us what was important to them and this included: (taken from maternity diamond standards)

Listen to us and the people who support us
Be patient sometimes we need more time or support when we are communicating with you or to process information
Use plain English and be clear when explaining things but don’t talk down to us
Take the time to help us understand you and for you to understand us
Respect us treat us how you would treat parents without a learning disability
Provide us with information in a way we understand this might be easy read, pictures or using the teach back method

Communication

Play the Communication: speaking to people with a learning disability Mencap film

All people can communicate and may use a variety of different means; many people with a learning disability have communication support needs, with half having significant difficulties. There is a wide range of communication difficulties but the barriers to successful communication are often due to the environment and other people. All people with a learning disability communicate in a number of ways, both verbal and non-verbal. It is the responsibility of healthcare staff to understand, recognise, and take steps to address, the challenges of communication. Clear and accessible information reduces barriers to accessing safe, effective and person-centred healthcare. Effective communication may be facilitated by the involvement of family/carers.

Reasonable Adjustments

Play the Treat Me Well Reasonable Adjustment film

Under the Equality Act 2010, all disabled people have the right to reasonable adjustments when using public services, including healthcare. These adjustments remove barriers that disabled people would otherwise face in accessing these services.

Making reasonable adjustments means ensuring disabled people have equal access to good quality healthcare. Reasonable adjustments can be simple changes made by one healthcare professional, or they can be more complex and need multiple teams to work together.

Making reasonable adjustments can mean removing barriers that people with a learning disability face, or providing something extra for someone with a learning disability to enable them to access the healthcare they need. When making reasonable adjustments it is also important that you record and share this information in clinical systems.

The North East and Cumbria Learning Disability Network are leading the NENC ICB reasonable adjustments flag project. There is a requirement by 2023/24 a digital flag will be available across health and care to identify a persons reasonable adjustments under the Equality Act. More information about this work can be found at www.necldnetwork.co.uk/work-programmes/digital

We have also developed the Reasonable Adjustment Campaign to raise awareness of reasonable adjustments across health and care and people with a learning disability and their families. More information and resources can be found at www.necldnetwork.co.uk/work-programmes/reasonbaleadjustments

Here are the Mencap ‘Treat Me Well’ top 10 reasonable adjustments:

Speak clearly and use simple words It is really important not to make assumptions that someone has understood information they have been given.
Take your time. People with a learning disability may need a bit longer than other patients to be able to understand information they are given and to make themselves understood. Just ten extra minutes can make a big difference to many people.
Be flexible with appointment times. Many people with a learning disability will find it easier coming to hospital when it is quieter, so an appointment at the very beginning or very end of the day might make their appointment go more smoothly. They may also need an appointment at a time when their supporter is able to accompany them.
Make sure people can get into and around the hospital. This includes ensuring there are no physical barriers for people using wheelchairs or with mobility issues, but also making sure signs in the hospital are as easy to understand as possible.
Provide a quiet place to wait. Hospitals are often busy, noisy places and this can be overwhelming for many people with a learning disability. Having a quiet place to wait can prevent people getting anxious and having to leave the hospital. Many people also find waiting a long time very difficult.
Listen to your learning disability liaison nurse. Most hospitals have learning disability liaison nurses who know lots about reasonable adjustments and can help you to support your patient. Ask your learning disability nurse if you know you will be seeing a patient with a learning disability.
Use the Maternity Health and Care Passport. This is a patient-held, personalised record of what women with a learning disability need to support them through their maternity journey, reading them will make your job a lot easier!
Provide written information in Easy Read format. This means people are much more likely to read and understand information about their appointments, procedures and results. This is also a requirement of the NHS’s own Accessible Information Standard.
Always ask the person what they need. Reasonable adjustments are about what the person in front of you needs and they know that better than anyone and any family or carers with them and do your best to provide the support they need. Make sure you meet the need, record it and share it with others.
To find out more information please visit the Mencap Treat Me Well campaign.

Mental Capacity Act

Play the Mental Capacity Act & Best Interest film

The ‘Mental Capacity Act’ is an important law for people with a learning disability. It protects rights to helps people to make their own choices. Where they are not able to make their own decision, the Mental Capacity Act says a decision must be made that is in their ‘best interests’.

The Mental Capacity Act 2005 is a law that protects vulnerable people over the age of 16 around decision-making. It says that: Every adult, whatever their disability, has the right to make their own decisions wherever possible. People should always support a person to make their own decisions if they can. This might mean giving them information in a format that they can understand (for example this might be easy read information for a person with a learning disability) or explaining something in a different way. But if a decision is too big or complicated for a person to make, even with appropriate information and support, then people supporting them must make a ‘best interests’ decision for them.

The Mental Capacity Act: 5 main principles

Always assume the person is able to make the decision until you have proof they are not.
Try everything possible to support the person make the decision themselves.
Do not assume the person does not have capacity to make a decision just because they make a decision that you think is unwise or wrong.
If you make a decision for someone who cannot make it themselves, the decision must always be in their best interests & well documented.
Any decisions, treatment or care for someone who lacks capacity must always follow the path that is the least restrictive of their basic rights and freedoms.
It’s also important to remember that a person may have capacity for some decisions but not others, or they may not have capacity right now but may regain it in the future with support. This means all capacity decisions should be regularly reviewed to make sure they still reflect the person’s ability to make decisions.