Written evidence submitted by Dr Howard Leicester MBE (MRS0437)

This is a personal request from a DeafBlind professional in Health Informatics - Dr Howard Leicester - nominally on behalf of the British Computer Society's "Digital Accessibility Specialist Group" [1].

The case is made in a report [2] from the Health and Social Care Alliance Scotland:

"Communicating effectively can help your patient to:
 Understand advice about how to deal with the symptoms of COVID-19 and keep themselves, and others safe;
 Comply with treatment such as medicine dosage;
 Keep to appointments and engage with healthcare professionals;
 Give you the information you need about their symptoms;
 Recall the information you have given them;
 Make their own decisions and give valid consent to treatment."

A solution may be NHS England's 'Accessible Information Standard' [3]. AIS is known across the UK but has never been widely implemented:

"From 1st August 2016 onwards, all organisations that provide NHS care and / or publicly-funded adult social care are legally required to follow the Accessible Information Standard.
The Standard sets out a specific, consistent approach to identifying, recording, flagging, sharing and meeting the information and communication support needs of patients, service users, carers and parents."

Formats include EasyRead and sign language; delivery channels encompass documents, websites and Apps, as well as face-to-face communications. Groups requiring such "reasonable adjustments" are highlighted as those:

"with a disability, impairment or sensory loss."

Adopting AIS may indeed make The Queen smile again:

NHS England's hard work on AIS was largely why Howard, as a minor AIS advisor, received an MBE in the 2017 New Year's Honours List.

Since Howard's invitation from The Queen came in standard print, he responded in a special format with help from the Guide Dogs Association.

The Queen's reply, from her Private Secretary, said in more formal language "The Queen did have a right good laugh':

"Thank you for your letter of 30th January enclosing a letter from Dr. Howard Leicester to The Queen. I can confirm that these have been laid before Her Majesty who was interested to see an example of a large print and braille letter and was most grateful to Dr. Leicester for writing as he did."

Related limitations with data and evidence.

A report from the Office for National Statistics (ONS) - "Improving disability data in the UK" [4] - highlights a missing, common approach to defining disability groups and, more generally, gaps in evidence.

Data on the Access To Work scheme (ATW) [5], within the Dept. for Work and Pensions, and on levels of attainment by disabled people in education [6], do not specify what technologies are actually advised to help successfully in work or education.

The firm behind a possible legal challenge over the lack of sign language at Downing Street Briefings [8[, FryLaw, also has an article on other areas that may prompt legal challenges [9]:

"The Covid-19 emergency hasn’t removed your rights under the Equality Act 2010 (nor under the Human Rights Act 1998).
Are you having difficulty with the following:
Access to online shopping at a supermarket?
Access to online facilities generally, because they are inaccessible?
Are you having to go out to charge an electricity or gas meter key, when you should be shielding inside because of your disability?
If you do go out to shops, are you being told that your Personal Assistant/Care Assistant/Communication Assistant cannot go into the shop with you?
Are there any other situations where your disability isn’t being taken into account where it should be, or where it is being used as a barrier to prevent you from getting a service?"

Such issues might well be addressed by exploring and adopting the Accessible Information Standard.

Sources of support.

Support with taking AIS forward may well come from the following organisations/people. They are aware of AIS and know Howard.

The British Computer Society [9[: have already helped Howard to download CoronaVirus documents from the Parliament and ONS websites, which didn't work easily with screen-readers; in parallel, is developing a pan-organisation Disability and Inclusion policy; has a strong Health and Care Group active in Covid-19 informatics.

The English, Government Digital Service [10], when not on CoronaVirus work, support delivery of the Public Sector Accessibility Regulations [11].

Nationally, Abilitynet [12] is a highly respected charity in Digital Accessibility, already running webinars on CoronaVirus issues affecting those at home for various reasons.

And so...

Inaccessible information forms and formats is one form of discrimination affecting those with disability, impairment or sensory loss facing the CoronaVirus.

Implementing the Accessible Information Standard offers solutions that should have been adopted generally in health and social care 4 years ago.

AIS may well improve, even save lives. Adoption also has a good chance of putting a smile back on The Queen's face.

May 2020

References.

All links last visited on 30 April 2020.

1. Digital Accessibility Specialist Group at The British Computer Society
2. COVID-19-Communication-for-people-with-Sensory-Loss-V2.docx from Health and Social Care Alliance Scotland.
3. Accessible Information Standard homepage.
4. Office for National Statistics, Improving disability data in the UK, online document.
5. Download page for "Copy of access-to-work-statistics-april-2007-to-march-2019-tables.ods".
6. Download page, From Disability In Education, part of "Other pages in this publication" in [4], for Copy of educationdatadownloadtables29112019115653.xlsx.
7. BBC News item on lack of sign language at Downing Street Briefings.
8. FryLaw article "Disability and Covid-19".
9. British Computer Society homepage.
10. Government Digital Service (GDs) on Gov.UK.
11. GDS on "Delivering the Public Sector Accessibility Regulations".
12. Abilitynet homepage.