The health service: writing to the blind and shouting at the deaf

The waiting lists for the relevant specialists lengthen and treatment is not given.

Patients with hearing difficulties misunderstand doctors’ advice and instructions and take the wrong dosage of drugs.

People with learning disabilities return from medical appointments more confused about what ails them than before they went in.

This is the stuff of madness, and yet it is still happening in Northern Ireland despite a campaign that has been going on for decades and well-crafted guidance notes issued by health authorities, the latest of which was launched in June of this year.

And it is an issue that in microcosm perfectly illustrates why it is so difficult to reform a vast behemoth like the health service, despite the good will of its managers.

Delivering information to patients in a form that they understand is not just a fine aspiration for the health service: it is a legal duty, covered not just by Section 75 of the Northern Ireland Act 1998 but also by the Disability Discrimination Act 1995.

And the consequences can be fatal. The  final report of the Confidential Inquiry into premature deaths of people with learning disabilities published in March 2013 found that, “The lack of reasonable adjustments to facilitate healthcare of people with learning disabilities, particularly attendance at clinic appointments and investigations, was a contributory factor in a number of deaths. GP referrals commonly did not mention learning disabilities, and hospital flagging systems to identify people with learning disabilities who needed reasonable adjustments were limited.”

An English report in 2013 published by Action on Hearing Loss showed that 28% of people with hearing loss had left their GP unclear about a diagnosis and 19% unclear about medication. Amazingly 14% had missed their appointment altogether because they had not heard their name called out in the waiting room.

In Northern Ireland the RNIB reports that 72% of blind or partially sighted people are unable to read personal health materials sent them by health professionals and 22% had, as a result of this missed appointments.

Meanwhile the same RNIB survey shows that too many health professionals wrongly assume that people with sight conditions prefer information to be conveyed to them by relatives or carers. There are also questions over the extent of training given on providing accessible information and a generalised ignorance about the existence of accessible information policies (the research was carried out in 2009 and recent guidelines may have changed levels of awareness) .

In 2013 the Northern Ireland Equality Commission investigated accessible information provision for people with learning difficulties. It found that training was available but this was negated by the fact that it was not mandatory and that guidelines were present but not always followed. All this was compounded by software and hardware issues which hampered the issuing of appropriate communications and the fact that the additional appointment time for surgeries with people with learning disabilities were not factored in.

It is a disturbing picture, one of a service which is discriminating against significant numbers of people with disabilities, and of a system which wants to address these issues and yet somehow cannot. And some of the consequences make for stories that seem barely credible: what sort of person writes a standard letter to someone who cannot read it, or summons them to an appointment which they do not attend because they cannot hear their name being called? If this was out there on the Nolan Show people wouldn’t believe it …

Disability law means that health bodies have a responsibility to make “reasonable adjustments” to ensure that they communicate with people in a way they can understand. By not doing so they make themselves vulnerable to legal challenge.

However RNIB research reveals that 65% of people with sight problems, for example, are unaware of this – and there are concerns as to whether it is even appropriate for people with health conditions to be put into the position where they have to take legal action against their own family doctor in order to assert their rights.

In England and Wales a solution has been found. In July of this year an Accessible Information Standard was issued which all organisations which offer health or social care are legally obliged to follow. It contains the following warning: “Effective implementation will require health and social care organisations to make changes to policy, procedure, human behaviour and, where applicable, electronic systems.”

There are no ifs or buts about limited appointment times or IT short-falls, it is compulsory.

In the spring of next year implementation will be reviewed.

Now the RNIB is demanding that the new Health Minister Michelle O’Neill adopts the same strategy here. The standard has already been written, all that is required is for it to be adopted in Northern Ireland.

The underlying problem with making changes to bureaucracies as large and complex as the health and social care service lies not so much in good intention and “saying the right things”: it is about implementation.

No amount of guidance will be truly effective unless it is legally enforced; no training will work unless it is mandatory, and the IT will not be fit for purpose until the relevant boffins are told to fix the problems rather than flag them up.

Unless and until that happens we cannot expect change, and that applies to much, much more than this specific issue of accessible communication.

Ms O’Neill needs to get out the big stick.