A report published today by the national deafblind charity, Sense, highlights the health inequalities and barriers faced by deafblind people accessing healthcare in England.
It comes ahead of the implementation of the Accessible Information Standard on July 31st, and stresses the urgent need for all health and social care providers to deliver a more accessible system for patients with sensory loss.
There are estimated to be over 358,000 deafblind people in the UK and they have some of the greatest health needs in society, with 69 per cent reporting two or more additional long-term health conditions, and 70 per cent requiring ongoing support from a GP or healthcare professional. This underlines the need for all healthcare services to be accessible to people who are deafblind, but to date this need is unmet.
The report indicates that inaccessible information and lack of communication support are the key barriers currently preventing deafblind people from accessing healthcare:
- One in two (56 per cent) deafblind people have left a GP appointment having not understood what had been discussed. Many reported needing to rely on a friend or family member to answer their questions or provide support and the lack of independence that this brought.
- More than three quarters (85 per cent) of deafblind people don’t get information about their healthcare appointments or follow up correspondence in a format that they can access. Most reported that they needed to rely on someone else to read their letters for them so that they could know what was contained in them.
More than a third (35 per cent) of deafblind people are not confident in managing their own health, and it is clear that the current system has put further strain on a group who already feel stressed and anxious.
The introduction of the Accessible Information Standard on July 31st represents a significant step towards addressing barriers to healthcare and improving accessibility for people who are deafblind. It sets out what providers must do in order to identify, record and meet the information and communication needs of those who use their services.
Timed to coincide with its introduction, the Sense report sets out why its successful implementation is essential to improve the lives of deafblind people across the country.
The full report can be downloaded at: https://www.sense.org.uk/healthreport
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Cathy
July 29, 2016
It is a very sorry state that our NHS is in, so this story about the woes of deafblind people is no surprise.
I do feel for providers who are already under enormous pressure given the numbers of people in this country who use the NHS, without the need to identify the vulnerable.
Who would actually be responsible for such identification? GP? Hospital Doctors? Nurses? Community Care Workers? I think actually identifying WHO is responsible for care of the vulnerable is important, if you are to improve services for the deafblind. Just saying: ‘Service Providers’ doesn’t cut it, as nobody is actually responsible. It would be very easy to “pass the buck”.
It is also important to realise that communication support workers are thin on the ground. Firstly, I don’t think the job appeals to many people, especially given they would need to learn hands on sign language. Personally I only know 3 communication guides for deafblind people. Little wonder they take friends to the Drs!
But, herein lies the problem: communication support is paramount for the deafblind, but how would service providers find them when the job appeals to so few people???
That is the rub. Turning information into braille is one thing; finding and keeping effective communication guides is quite another and I think it would be wholly unfair to put that pressure on providers, alone.
Linda Richards
July 29, 2016
I have two comments:
1): This section of Sense’s report about the % of those with additional
Long term health conditions makes for scary reading. See below:
‘Additional long term conditions
Respondents to the GP Patient Survey who identified as being deafblind (selecting ‘blindness or severe visual impairment’ AND ‘deafness or severe hearing impairment’) also reported high levels of additional long term conditions:
• 12.2% Alzheimer’s
• 28.3% angina or long-term heart problem
• 50.5% arthritis or long-term chest problem
• 23.6% diabetes
• 43.9% high blood pressure
• 12.1% kidney or liver disease
• 9.6% long term mental health problem
• 10.3% long term neurological problem.’
I wonder if there is any correlation berween some of these conditions and deaf blindness? Could there be (if there isn’t already), some cooperation between Sense and a health-based group to work on this and to be proactive in securing better health information and services directly to these people.
2): This point is not specific to Sense but to any organisation (deaf or hearing) presenting reports or addressing recommendations.
I just wonder how much more successful an actual illustration of ‘access’ would work. All too often, access is a ‘tick the box’ exercise…. “We’ve filmed it, we’ve subtitled it and, oh yes, we’ve signed it. Done.” Yes, we the end user have been done.
How I long for a re-write of some of these reports and so render them linguistically and culturally appropriate for reading or later translation.
What is wrong with using ‘Easy Read’? Probably the most useful and accessible method of relaying material that could also form the basis for a BSL translation. More to the point, it’s for everybody. Lexically and cognitively dense material that does not make it relevant not engages the end user is a futile effort and a waste of money.
For instance, ramps are not just for wheelchair users, but those pushing pram, laden shoppers, those who are challenged in terms of mobility, age, etc..
Instead of an accessible service being about something ‘specially’ delivered for specific groups, we could actually say this is for everyone and make it more inclusive. Like ramps. Like ‘Easy Read’.
I’ve just been reading and writing to someone who has Usher who’s asking about other deafblind people’s experience of following BSL signs on the hands. Something so fundamental as this, never mind background colour or visual signing frame are specific examples to illustrate in a ‘how to do it’ video or guide. Don’t tell. Show.