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How to encourage and act on feedback from people with learning disabilities

Learning disability nurses and campaigners offer advice on improving care

Learning disability nurses and campaigners offer advice on improving healthcare services for everyone

  • Care Quality Commission says about half of people with learning disabilities and/or autism are reluctant to give feedback about their care
  • Creating a system and culture that encourages health and social care staff to be confident about asking for service-user feedback is key
  • Making reasonable adjustments for service users when seeking their feedback should be a main consideration, say Mencap campaigners

Nearly half of people

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Learning disability nurses and campaigners offer advice on improving healthcare services for everyone

  • Care Quality Commission says about half of people with learning disabilities and/or autism are reluctant to give feedback about their care
  • Creating a system and culture that encourages health and social care staff to be confident about asking for service-user feedback is key
  • Making reasonable adjustments for service users when seeking their feedback should be a main consideration, say Mencap campaigners
Care Quality Commission says about half of people with learning disabilities and/or autism are reluctant to give feedback about their care
Picture: iStock

Nearly half of people with a learning disability and/or autism are reluctant to give feedback on their care, according to the Care Quality Commission (CQC).

England’s health regulator, the CQC, believes service users often fear negative consequences if they speak out, and is trying to encourage people with a learning disability and their families or carers to share feedback as part of its Because We All Care campaign.

Here, learning disability nurses and campaigners share their experience and advice on how to encourage – and act on – feedback to improve services for everyone.

Why is feedback important?

University of Nottingham professional lead for learning disability nursing Helen Laverty says: ‘Getting feedback isn’t just important – it’s essential. Without feedback and without listening to people’s voices, we don’t engage at all, and there’s no co-production.’

‘There is great skill in communicating with someone who has a learning disability, not just in using plain English, but also how we present that information for people to engage with, and to be able to understand properly’

Helen Laverty, University of Nottingham professional lead for learning disability nursing

Mencap campaigns assistant Vijay Patel
Vijay Patel

Mencap campaigns assistant Vijay Patel – who has a learning disability and is working on Mencap’s Treat Me Well campaign – says health services should make it easier to give feedback to improve care.

‘I know people with learning disabilities who have not been able to get good healthcare because they haven’t been given reasonable adjustments like getting extra time to speak to the doctor or the nurse, so that they don’t feel rushed.

‘But people with a learning disability can be anxious about themselves, and shy about speaking to a doctor or a nurse about how they feel. It’s important that they help people to feel confident to say how they feel – they should speak clearly and make sure the person with the learning disability understands what they are saying.

‘They shouldn’t use any jargon. If doctors and nurses make it harder to understand, then we won’t be able to communicate with them properly.’

Why are people with a learning disability and/or autism more reluctant to give feedback?

RCN learning disability nursing forum member Tolu Olaniyan – and founder of Pretola Global Health & Consulting, a company that advocates for people with learning disabilities and/or autism and epilepsy – says there are several reasons people are reluctant to give feedback. ‘Some of it is systemic, in the sense that the processes in place in some services do not allow for transparent feedback.

‘And for some people with learning disabilities, it’s about not knowing how to give the feedback or not being empowered to speak their truth.

‘If someone with a learning disability is in a supported living setting, surrounded by their paid carers and they want to give feedback about a service they are receiving, how do they give that feedback – who are they going to give the feedback to, who is their point of call?

‘What system is in place for that person to be able to have that conversation in a non-threatening environment, where there are no repercussions for them for speaking their truth?’

Tolu Olaniyan, RCN learning disability nursing forum member and founder of Pretola Global Health & Consulting
Tolu Olaniyan

Ms Olaniyan says systems can be a barrier to people with learning disabilities who don’t want to ruffle feathers. ‘They might worry about what’s going to happen if they speak out. Will their one-to-one care be cut, will their good carer who they love be taken away or will their privileges be taken away? It all boils down to fear.’

Healthcare organisations need to recognise that traditional complaints processes can be hard to navigate, particularly for people with a learning disability, adds Ms Laverty. ‘There is great skill in communicating with someone who has a learning disability, not just in using plain English, but also how we present that information for people to engage with, and to be able to understand properly.’

How can learning disability nurses encourage feedback?

Learning disability nurses can invite people to give meaningful feedback by ensuring it isn’t a tick-box exercise, and encouraging families to talk openly, says Ms Laverty.

Creating a system and a culture that encourages staff to be confident about asking for – and acting on – feedback is also key, she says, as is making processes as accessible as possible. ‘Look for an easy-read version that gives people opportunities to engage with you meaningfully.

‘Think creatively in terms of using a picture exchange system – so you could show someone a picture of the bedroom you’re offering them and a bedroom that’s a bit different, to see which one they choose, so you’re actually giving real choice. And if we give real choice, you have to respect the choices that people have made.’

Ms Olaniyan adds that services have to want genuine feedback and accountability is key. ‘If all a healthcare service wants is a pat on the back – for you to tell them that they have done well so that it looks good on their documentation – then that’s not the right culture or system.

‘You have to be transparent and you have to want to improve. People need to know that if they give feedback that it’s going to be taken seriously, it’s going to be actioned – and there will be no negative repercussions.’

Better communication, more time and clearer information

What good looks like iconPeople with a learning disability can miss out on information telling them about what ‘good’ should look like, and may not have a clear idea of what level of healthcare service to expect

There can be a lack of awareness about what reasonable adjustments to expect – and what is okay to ask for. It is easy for people to feel like they are ‘too much trouble’

Service users may be more dependent on health or social care staff if they have a rare condition or need lots of support – this means there is more risk in speaking up, for example in case the caregiver doesn't want to help them anymore

Accessible information iconA lack of accessible information, services and advocacy means that people with learning disabilities are less able to exercise choice over providers, which is a main mechanism for providing feedback and helping service users to feel safe to do so

People with a learning disability may have less understanding of what feedback is used for and the structures around health and care providers, for example, understanding that doctors have to account for their actions

Accessible information about giving feedback or making complaints is often not as readily available. Service users can easily be excluded from some processes, for example when policies state things need to be done in writing – and may struggle to get the support they need to speak up

Don't want to be seen as trouble iconPeople with learning disabilities may be reliant on the person that they wish to give feedback about to actually give the feedback in the first place. This can prevent them feeling safe or confident in being able to say what is on their mind

If a service user is supported by a social care team or similar to look after their health, it may be hard to separate the healthcare provider’s actions from the social care provider’s, for example: ‘My doctor and social care worker talked over me for the whole appointment’. Yet feedback mechanisms can tend to focus on individuals and health or social care, rather than a whole system or relationships

Hard to separate health from social iconSocial care staff also sometimes report feeling disempowered around healthcare professionals, so may also struggle to support service users to speak up about their experiences or to speak up on their behalf

Source: Mencap Treat Me Well campaign

Recognise that complaints, concerns and feedback are valid because it is someone else’s reality

NHS England’s Ask Listen Do

Ms Olaniyan points to national initiatives, such as NHS England’s Ask Listen Do, which supports organisations to learn from and improve on the experiences of people with a learning disability and /or autism, as well as their families and carers, making it easier to give feedback or raise concerns.

It’s also important not to be defensive, even if we feel a complaint is unjustified, she adds. ‘We have to ensure that we recognise that complaints and concerns and feedback from people with learning disabilities and/or autism and their families are valid. It’s their own reality. If you just say: “But that’s not true”, you’re not acknowledging their reality at a particular time.

‘It starts from acknowledging that there is a problem, because if you don’t, then you’re not going to listen and you’re not going to do anything about it.’

This is hard, concedes Ms Olaniyan, but advises walking through the issue to find out why – if something isn’t true – the complainer thinks it is. ‘What’s the cause of their concerns? Sometimes it can be about miscommunication and that can be addressed. It’s important to listen, and then say: “How can we put this right for you? What would be the best solution?”. ‘Involve them by asking how they want it to be resolved.’

Getting it right is important for everyone, she adds. ‘If it doesn’t go right for the individual, it doesn’t go right for the family and it doesn’t go right for the service.’

‘I can’t speak for all of my friends with a learning disability, but I’d like to make sure they can speak up for themselves’

Vijay Patel, Mencap campaigns assistant

From the perspective of someone with a learning disability, Mr Patel believes there are things that services and individuals can do to encourage feedback. As well as giving extra time for consultations, this includes going to a quiet room where necessary, and encouraging people to have a parent, guardian, support worker or friend with them if they wish.

‘All these things make a huge difference and it’s important that this continues to happen,’ says Mr Patel. ‘It’s important for people with a learning disability to be able to speak up for what they care about. I can’t speak for all of my friends with a learning disability, but I’d like to make sure they can speak up for themselves.’


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