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King's Lynn hospital aims to improve communication

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Earlier this year, Healthwatch England uncovered that many health and social care providers significantly failed their duty to ask about people’s communication needs and then act on this information.

In West Norfolk, the Queen Elizabeth Hospital in Lynn admitted it did not fully comply with the standard but was working hard to improve things and the Norfolk Community Health and Care NHS Trust wanted to ensure it was consistently gathering information about patients needs across all its services.

Disabled people have reported being blocked from NHS care due to poor communication following some 600 people’s experiences of care reviewed in deep-dive analysis of NHS communication support.

Alex Stewart, chief executive of Healthwatch Norfolk (57939155)
Alex Stewart, chief executive of Healthwatch Norfolk (57939155)

The watchdog says findings are a stark reminder of why NHS England and the 42 new Integrated Care Systems need to ensure all parts of the health and system abide by the Accessible Information Standard (AIS).

Healthwatch England warns that health and care services are failing in their legal duty to provide accessible information for people with physical and learning disabilities.

Two thirds of respondents said communication support had got worse since the start of the pandemic.

One in four people including deaf, blind and with mental health conditions reported being actively refused communication support.

As part of the Your Care, Your Way campaign, between March and May 2022, Healthwatch carried out an online survey of 605 people across England and Wales affected by communication challenges.

Whilst the survey participants were self-selected, their views are likely to reflect those of a significant group of people who need communication support.

They found that one in four respondents (28%) said they had been refused help when requesting support to understand information about their healthcare.

This included information being provided in formats such as Braille, British Sign Language, and easy read.

Not being given information in the right format affected people’s mental health and wellbeing, meant they missed out on important information about their health or meant that they could not contact a service they needed.

Respondents also reported that the quality of communications from NHS and social care services had got worse over the last two years. Two-thirds felt that the way health and care services communicate with them had got worse or slightly worse over the course of the pandemic.

It is not just people with sensory impairments or learning disabilities who are affected by this issue.

A fifth of those who reached out to Healthwatch to share their experiences identified themselves as having a mental health condition, such as depression or anxiety.

Of these people, 35 per cent reported they rarely or never get the support they need to understand healthcare information or communicate with staff. The majority of them also said that the lack of information in a format that they could understand had a further impact on their mental health and wellbeing.

The findings come as NHS England (NHSE) are conducting a review of the Accessible Information Standard (AIS), a legal requirement which was created in 2016 to ensure all publicly funded health and social care providers meet the information and communication needs of people who are deaf, blind or have a learning disability.

Publication of this review is expected later in the year with updates to be implemented by April 2023.

Alex Stewart, chief executive of Healthwatch Norfolk, said: "This campaign remains a priority for us.

"We have had very encouraging early discussions with senior officials at the Norfolk and Waveney AIS and they share our view this is important, and we would like to continue working together to improve things for patients.

"There are examples of very good practice in both hospitals and GP surgeries which we are going to highlight this summer and autumn, and we are also going to go back to all the NHS trusts we approached earlier in the year to see what progress they have made.

"Meanwhile we are still keen to hear from patients and their families about any specific issues they have had, so we can keep feeding back to health and social care leaders and keep up the pace of progress on this issue."

Healthwatch is working with leading disability organisations, including RNIB, RNID, Mencap and SignHealth, to inform the long-awaited review of the AIS.

The coalition called on NHSE to take on board their recommendations, including stronger accountability across services to protect people’s rights to accessible information.

Louise Ansari, national director at Healthwatch England said: "Our findings are a stark reminder that some of the most vulnerable people in our society are still excluded from access to healthcare because they communicate in British Sign Language, or they need information in visual formats.

"And this is despite that fact that their rights to accessible information are protected in law.

"People’s right to accessible information should be based on their communication needs, not just on a diagnosed disability.

"For instance, people who have a mental health condition or are waiting for a diagnosis should have a right to request communication support in the same way as people who have a sensory loss or a learning disability.

"If people cannot get information about their healthcare they understand, this can have a significant impact on their mental health and can lead to them missing doctor’s appointments or taking the wrong medication, putting them in danger.

"As we are waiting for the review of the Accessible Information Standard, we strongly advise that NHSE and the newly created 42 integrated care systems ensure equitable access to healthcare for everyone."

Healthwatch England is running a Your Care, Your Way campaign calling for everyone to be given healthcare information in the way they need it.

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