Last chance to have your say in the NHS accessible information standard consultation
I had the great privilege to represent RNIB on the advisory group for the NHS Accessible Information Standard for the last 18 months and will be submitting my response to the consultation (as a patient) this week. NHS England’s consultation closes on 9th November so you have less than a week to get involved. So why should you?
Who does the standard affect?
The standard affects everyone working for the NHS who has contact with patients or whose work impacts on patient information. It also affects anyone working in adult social care.
The standard also affects any patient or carer who has an information or communication need because of a disability such as being visual impaired, Deaf or hard of hearing, has a learning disability or a communication need due to having had a stroke.
What exactly is the standard?
The standard is a set of rules which NHS and adult social care providers will need to follow. The standard covers:
How and when to record a patients communication and information needs (such as recording that a patient needs information in large print, via email, in easy read or requires a sign language interpreter.)
What and when communication and information support needs to be provided
What is the consultation about then?
A draft of the standard has now been produced and NHS England need to know what patients, carers, NHS and adult social care workers think of it. The consultation also asks if there is anything missing from the standard and how the standard should be implemented and enforced. So the consultation is broader than just what the standard says.
How do I get involved?
NHS England has produced some really excellent consultation documents to help you understand what is in the standard and to help you answer the questions in the consultation survey. You can find them all here
Acces to Work News Special
Access to Work News Special
This week there were a lot of stories in the media and on disability blogs and websites about Access to Work. This coincided with the last of 4 evidence sessions on Access to Work to the Department of Work and Pensions Select Committee in Parliament.
The Access to Work scheme is 20 this year and I wouldn’t have been able to work with out it. Access to Work provides equipment and support for disabled people to enable them to work. For me it has provided assistive technology for my work computer. a large print key board, magnification equipment and when I need it transport support. If Access to Work didn’t exist most employers would find it incredibly difficult or impossible to employ many disabled people.
The Access to Work scheme is a great “social model” response to the problems disabled people face in the work place, but it has never been given the publicity it deserves, it has never been administered properly and never given enough funding. But what is very clear is that if this and successive governments want to help disabled people to find and stay in work, they need to support the Access to Work scheme not cut it or make it more difficult to use. Yet this simple fact just doesn’t ever seem to be grasped by so many politicians and civil servants.
Below are a number of links to different takes on the Access to Work crisis as one article puts it.
The Limping Chicken Access to Work crisis
Susan Scott Parker blog on Access to Work
BBC report into Access to Work changes denying disabled people vital support
See Hear report into Access to Work changes affecting deaf people and those self employed
Article in the Daily Express about actress and business woman Julie Fernandez’s Access to Work problems
Lord Freud
Ever since Lord Freud’s ill judged words about employing disabled people broke in the news, I have wanted to blog about it. The trouble is, the incident stirs up so many different emotions in me and touches on so many disability and social issues, I just don’t know where to start. Do I start with his language and why it is so deeply disturbing to disabled people? Not just his language in the secret recording but both his apology and Cameron’s response are worth analysing. Or do I tackle why employers are reluctant to take on disabled people from all backgrounds, with all kinds of qualifications and skills? Do I explore how employers can benefit from employing disabled people? Or do I tackle the media’s coverage of the issue? There are still ripples within the media two weeks on; I’m sure if Lord Freud’s gaff hadn’t been exposed it wouldn’t have been quite so timely for the Telegraph to include this question on disability in their business agony uncle section yesterday!
So I have decided that the best thing to do is to write a series of separate blog entries each one tackling a different angle. So I am going to start with language.
What was said?
So this is what Lord Freud was recorded saying after he was asked a question on what to do about “mentally damaged individuals” who employers are unwilling to employ at the minimum wage, at a fringe event at the Tory Party Conference:
"You make a really good point about the disabled... There is a group - and I know exactly who you mean - where actually, as you say, they're not worth the full wage and actually I'm going to go and think about that particular issue, whether there is something we can do nationally, and without distorting the whole thing, which actually if someone wants to work for £2 an hour, and it's working can we actually…”
What’s the problem?
So why did so many disabled people and others find Lord Freud’s comments so offensive and or disturbing? Baring in mind that I heard some, like the Adam Smith Institute. argue that Lord Freud was talking about a person’s economic worth, something they say everyone has, something quite straightforward and a fact of our society. I think the first thing to say is that I don’t think many people like to think of them selves in terms of their “worth” to an employer or the economy, even if that is how our society is structured. We each have an economic worth which organisations are prepared to pay us for: that’s how capitalism works. I’m not going to argue whether that is right or not, but what I will say is that I think we certainly have a problem where we grossly under value the worth of many people who carry out work in our country. Important work like cleaning our streets and workplaces, caring for our children or for older people for example, are desperately under valued.
I feel like a second class citizen
There’s a deeper reason for why many disabled people like me find the idea of measuring our worth really disturbing. So many disabled people are reminded every day that society considers them worthless. That might seem like a very strong statement, so here are some examples of how this message of worthlessness is reinforced to disabled people every day.
When I was still working at RNIB I carried out some research into blind people’s experience of voting. 69% of those surveyed were unable to vote in secret and without assistance. This meant they had to tell someone else who they wanted to vote for and trust that person to cast their vote for them. Visually impaired people are being denied a fundamental democratic and human right. 90% also told us they couldn’t read most or any of the information sent to them by political parties. How does this make visually impaired people feel? The types of phrases they used were:
“I feel like a second class citizen, like I’m not worth the same as other folk."
"None of the political parties cared enough to provide accessible information to me."
"I feel left out. Political parties are not trying to reach out to me like they do for others.”
Of course it’s not just voting. Every time a wheelchair user or someone with a mobility impairment can’t get into a train station, they are being told their needs are not worth the same as other people’s. Every time a person with a learning difficulty is told that there isn’t enough time to explain something to them or give them information in easy read, they are being told that their needs aren’t worth the same as other people’s. Every time that induction loop doesn’t work, someone who uses a hearing aid is being told it doesn’t matter if you can hear us or not, you’re not really worth the effort. Every time a person with a mental health problem is told that they just need to “ cheer up and get on with it” they are being told their health is not as important as what ever else is going on. Every time a disabled person is turned away, turned down, denied a basic right everyone else takes for granted, they are being told that they are not worth the same as others. The other message that goes hand in hand with this is that in fact you’re a burden. It costs too much, will take too long, it’s not important enough to make stations, voting, information, society in general accessible for you. This is why measuring a disabled person’s “worth” is such an emotive thing to talk about carelessly like Lord Freud did.
I think it is important to say here that in the last 15 years there have been some big improvements for disabled people in terms of shops and services becoming more accessible (not all of them but more than in the 1990s.) There is now comprehensive disability and equality legislation in place. But the problems I list above are all common and still exist and haven’t improved enough over the last decade. Sadly this is true of employment figures for disabled people - but I’ll consider this in the next blog piece.
Creepy caring
But it wasn’t just Freud’s language in his original gaff which caught my attention, it was also the words he used in his apology and what David Cameron said in the House of Commons when confronted with the gaff.
Lord Freud said in his apology that he “cared deeply about disabled people” whilst Cameron said he wasn’t to be lectured to about “Looking after disabled people” (invoking not for the first time his first hand experience of disability through his son Ivan who sadly died.)
If Lord Freud had made a gaff about equal pay for women or job opportunities for young black men I don’t think he’d have said either ‘I care deeply about women” or “I care deeply about young black men.” Both phrases when not about disabled people sound creepy. But for some it’s still completely acceptable and appropriate to speak about “caring for disabled people” rather than talking about disabled people’s rights. Similarly Cameron’s first hand experience of disability was about being a farther to a disabled child who did need caring for and looking after. What neither politician and many of their colleagues seem to be able to do is to view disabled people as unique individuals with rights to independence. Even if some disabled people need “care” or “support” this doesn’t mean we don't deserve freedom of choice and opportunity to live our lives like others do. Such as being able to work, travel, shop, communicate, take part and contribute in our communities and wider society.
So the Lord Freud gaff didn’t just expose politicians who use clumsy language but for me it exposed a government that just doesn’t understand disabled people or our rights. It exposed politicians stuck in the past expecting disabled people to be passive recipients of care and token job opportunities.
This leads to the question: How can job opportunities be developed for disabled people with all kinds of skills, qualifications and experience? I shall tackle this next time.
More News
David Cameron uncomfortable with feminism
It appears that David Cameron has refused to wear a T-Shirt for an Elle Magazine feminism issue, with the slogan “This is what a feminist looks like.” This is whilst Nick Clegg and Ed Milliband happily wore the T-Shirt. To be fair on Cameron at least he’s not being hypocritical by wearing it, when he clearly feels uncomfortable with the word and the principles of feminism.
Only a few days left to contribute to EHRC’s research into religion and belief in the workplace
The chance to contribute to research into people’s experiences of religion and belief in the workplace closes on Friday 31st October. Find out more here
My Voice, My Wheelchair, My Life
NHS England launch new wheelchair services campaign. Sadly using that special NHS jargon they say that their mission is:
“To mobilise and galvanise commitment groups to transform wheelchair services to a point where users with complex and changing needs can always get the right wheelchair for their needs in a timely way, and appropriate and continuing support.”
I think they mean that they are going to get NHS staff, wheelchair providers, patients and others together to make sure that those with complex needs can get the right wheelchair for them as quickly as possible! This is a really important issue for many people who need complex wheelchairs particularly for children and young people. Many people who don’t know any wheelchair users just assume everyone gets the wheelchair they need on the NHS. Sadly this is not the case with many families and individuals paying thousands for specialised wheelchairs and equipment. So even if the NHS jargon is a bit off putting this is a very worthwhile campaign.
Baroness Tanni Grey-Thompson the campaign champion and is launching it at an event at the end of November. You can find out more here.
News Round Up
Here are a few things which have got me thinking over the last few days. Ranging from parliamentary inquiry into women in broadcast news, NHS accessible information and female staff at ASDA threatening legal action over equal pay amongst others.
House of Lords Select Committee Inquiry into women in new and current affairs broadcasting
Launched earlier this year the inquiry into women in news and current affairs broadcasting is now at the expert witness stage. This Guardian blog piece mainly focussing on older women alerted me to the inquiry at the weekend. Before I read the blog piece I was watching News 24 and thinking about the number of older women correspondents and news readers many of whom seem to be tucked away on the rolling news channels. I shall watch what happens with this inquiry with interest.
NHS Accessible Information Standard
You have a fortnight to have your say on the NHS England draft accessible information standard. The consultation closes on 9th November and you can find out everything you need to know about it here. In a nutshell the standard is a set of rules about providing accessible information to patients who have a visual impairment are deaf or have a learning disability. NHS and adult social care services in England will have to follow the standard by both recording who needs communication support or accessible information and then providing that support or information in an accessible way. Whilst I was at RNIB I sat on the advisory group for the standard and helped organise engagement events with blind and partially sighted people for the consultation. As a partially sighted patient I will be submitting my own response to the consultation and I would urge anyone with an interest in this to do the same. The actual consultation documents are really easy to understand and thorough, even if you are new to the standard, so please do have a look at them here.
Another reason to get your eyes checked regularly
Research is being funded into whether a computer programme can identify early stages of Alzheimer’s during an eye examination. The Guardian reports about this research at University of Dundee find out more here.
Equal pay for women workers at ASDA
It seems our supermarkets aren’t having a great time at the moment. Tesco is in all kinds of financial trouble and on Friday I saw this story about ASDA being threatened with legal action by many of its women workers. Interesting that the article notes that other supermarkets could be challenged.
Hareonna Diversity is back in business
Hello! It’s been a while since I wrote on this blog but I am really pleased to announce that Hareonna Diversity is back in business from 26th October 2014. I will be starting a new ad-hoc contract with NHS England as an external appraiser for information standards. This has given me to opportunity to return to running my business.
I have had a wonderful time working for RNIB covering some really exciting campaigns. I’ll outline a few of them below. But firstly I just wanted to say thank you to all of the great people and organisations I’ve worked with over the last 4 and a half years whether I was delivering contracts for you or working with you at RNIB I have had a wonderful time covering really varied areas and topics.
So what have I been up to at RNIB? Well one of my previous blog entries from nearly 2 years ago relates directly to one of the biggest campaigns I worked on, the bus campaign. In fact a great deal of my time has been taken up campaigning to improve bus services for blind and partially sighted people. I have attended nearly 30 Swap With Me bus events and met with bus operators from all over the country helping them to improve access and customer service. The campaign has been featured on Channel 4 News and You and Yours on Radio 4. Last summer I travelled over 2000 miles on buses around England on a bus relay. This summer I turned my attention to Scotland and travelled from northern England to Edinburgh by bus over a couple of days. You can find out more here and get involved by emailing Baroness Kramer about making a positive decision to ensure all bus drivers in the UK are trained in disability awareness.
Other campaigns I’ve worked on have been the Talking ATM campaign which has secured commitment from the main UK banks to provide accessible ATMs which talk to blind and partially sighted people through headphones.
I’ve also been involved with projects to make NHS and DWP information more accessible. I currently sit on the advisory group for NHS England’s accessible information standard. NHS England are currently consulting on that standard and you can find out more here.
I have enjoyed my work so much at RNIB I have decided to stay on as a Volunteer Campaigns Co-ordnator so I can continue to campaign locally on these and many other issues.
News Round Up
Each week I'll try to provide some links to interesting news stories
The Parliamentary Public Accounts Committee criticise disability benefits testing:
Here is how the BBC reported the story that the Parliamentary Public Accounts Committee had criticised the Department for Work and Pensions and the private company ATOS for their track record on awarding disability benefits. With 38% of appeal cases being awarded against the DWP the committee was concerned about value for money as well as how it was affecting disabled people in a real sense.
The Blackpool Gazette report on the story as their MPs have commented on the report. (I like to see how regional press comment on important stories!)
Historic vote on gay marriage
Last week the House of Commons took the first step in making gay marriage a reality. I thought it was quite interesting to see how the Los Angeles Times have covered the story today.
The Telegraph were feeling more pessimistic about how the vote in the Lords would go with their story at the weekend
Diva Magazine had a much more upbeat article about the vote with some interesting quotes from the debate.
Mid Staffordshire NHS: Francis report into neglect
As the Francis report into neglect of patients and mismanagement at Stafford Hospital was published last week many organisations commented on the report, it's findings and recommendations for the future.
Understandably Age Cymru issued comments on the day the report was published as so many of the patients neglected were older people. Age UK also issued a full briefing about the report which can be found here
Today the Guardian Healthcare Network publish a comment piece on how to make the most out of the recommendations in the report.
How disability aware are bus and coach drivers? Government use EU exemption so drivers don't have to have mandatory training
A colleague alerted me to this small parliamentary announcement last week. Basically EU passenger rights legislation that requires all bus and coach drivers to receive disability awareness training is due to come into force on 1st March 2013. The UK, however has decided to use its right to exemption over EU regulation, meaning that in the UK, bus and coach drivers will not have to attend mandatory disability awareness training after all. Norman Baker the Lib Dem under secretary for transport does say in his statement that they will review the situation in a year. Of course this is totally in keeping with the Coalition Government's policy of reducing "bureaucracy" and regulation.
This announcement is a huge disappointment to all those who have campaigned for better access to public transport.
So why is disability awareness training so important for bus and coach drivers?
Anyone who saw Channel 4's No Go Britain campaign reports last year will know that public transport is far from fully accessible for all disabled people. Even in London where so much has been done to make public transport, especially buses, accessible there are on going problems. A lot of the problems disabled people face when using buses and coaches are not just physical barriers, many are attitudinal.
The busy and / or inexperienced bus driver who won't deploy a ramp, is still all too common. Outside of London many buses don't have audible / visual announcements and bus drivers should assist disabled passengers to know which stop to get off at for example, but I have come across drivers who seem to think this is a task beyond them. (I have to say I have also come across some excellent bus drivers who have helped me tremendously.) I have even heard about bus drivers being abusive to passengers who could not count out the right bus fare or who took too long finding the right money due to learning disabilities or dexterity problems. Surely these are all breaches of most bus companies simple customer service policies let alone examples of unfair treatment of disabled passengers?
"Poor customer service can be the trigger that causes disabled people to make a formal complaint about discrimination."
When I worked for the Disability Rights Commission I had to carry out an audit of all the phone calls we had received relating to complaints about transport and other services over a 2 year period. One of the striking things I found was that in 99% of complaints there was a bad customer service element to the unfair treatment reported. I remember one person explained to me that she was used to having problems accessing services, whether it was shops on the high street or trains and buses. It was only when she experienced really bad customer service on top of the usual access problems that she felt she had to complain. As she put it: "I'd spend my whole day complaining to you if I complained about every time I can't access a service or a bus! Generally shop, station staff, bus drivers etc are very apologetic and try to be helpful. But when you come across someone who is totally ignorant to the problems you're facing, or who is rude and totally unhelpful that's when you have to complain!"
Disability awareness training of course isn't going to turn every grumpy bus driver into the worlds most helpful but what it will do is give confidence to those drivers who are inexperienced or nervous about working with disabled people. So often simple misunderstandings arise because a driver is nervous about what is the right thing to say in a situation. Disability Awareness training when delivered properly will also make drivers aware of their responsibility and those grumpy types will at least see being fair to disabled people as part of their duties as a bus driver not an added optional extra.
Disabled people were very pleased that bus and coach drivers were going to receive disability awareness training, as not only should it improve the service they experience when using buses and coaches but it also sent a message to bus and coach companies that disabled passengers needed to be considered from the start of a bus drivers career and not just when he or she came across a disabled person trying to get on their bus. The government's veto on this regulation sends the opposite message to disabled people and transport companies saying that disabled people don't really matter, that the level of service they receive now is fine. Something which clearly is not true.
Review in one year?
I am curious to how Norman Baker intends to monitor and review this decision after a year? How will he measure success? I may try and find this out and of course will let you all know what I find out.
The Children and Families Bill
The Children and Families Bill had a rather easy ride through the Commons earlier this week. The Bill has a diverse remit looking at adoption, parenting rights and the education of disabled children (or those with special educational needs as is still the parlance in the education sector.) I helped provide a response to the Bill, when it was a green paper, for Disability Rights UK, so I thought it might be useful to pull together some links to the comment pieces about the Bill from a disability point of view.
The Guardian had a panel comment on the Bill including Nicky Clark expressing her views on how it will affect disabled children.
Mencap the UKs leading learning disability organisation describe the Bill as a missed opportunity.
The Council for Disabled Children of course covered the Bill and included information from the minister responsible for SEN, Edward Timpson, which he had put in a letter to their CEO.
Scope are actually running a campaign around disabled children and families you can find out more about their campaign and response to the Bill here.
This link is a little different, it's to the evidence submitted in November by Disability Rights UK to the Government on special educational needs and the draft provisions for the Bill.
Any way I hope you find these articles helpful.
Great Opportunity from the Guardian for Disabled People
The Guardian Media Group are running a Positive Action Scheme for disabled people who want to work in journalism, and for the Guardian and Observer news papers. The details on the scheme can be found by clicking on the link above. The Guardian say about the scheme however:
"The Guardian believes there should be a better representation of our diverse society in journalism, and each summer offers placements of up to two weeks for students or graduates.
This scheme is for those with disabilities.
Successful applicants will learn about different aspects of the profession, gaining an insight into the workings of a number of sections across the newspaper and website."
Sounds like a great opportunity for budding journos, so please spread the word as the closing date isn't until March 22nd!
