Running with Ray

Hello, everyone, this is a first for me. I am posting something written by someone else! Lazy or what? Actually not! I read this article written by Sue Karstens and thought it amusing, educative and insightful so on that basis I thought I’d share it with all of you. I hope you enjoy it and if you’ve got something you’d like to share let me know.

Some years ago I worked in the accounts department of my local leisure centre.

I had always loved sport in general, and one of my passions at that time was running. Having participated in four London Marathons, I was looking for a new challenge. It came in the form of a knock at my door, and the arrival of one of the gym instructors.

“You have run the London Marathon, haven’t you?”

I nodded.

“How would you feel about running as a guide for a blind runner?”

She explained that she had a client in the gym who had been referred to her by his GP. It was an unusual story; Ray had gone to work on a building site, where he had fallen and banged his head. He seemed to be okay but collapsed at the station on his way home, and when he woke up, he couldn’t see. No warning, no history of illness. He went from sighted to blind in a heartbeat. He lost confidence and became clinically depressed. The exercise programme was to aid in his recovery.

It was Suzy’s responsibility to design a fitness schedule. She told Ray to set himself a goal. He said that he wanted to run the London Marathon. She smiled and suggested a realistic goal, but Ray was adamant; he was not a man to accept half measures!

Our first meeting took place on the running track during my lunch break. My training partner Helen had joined us because even at this early stage I realised that I was going to need backup. If I became ill or injured at any point, I didn’t want to impede Ray’s progress.

We were all terrified. I was afraid that I wouldn’t be up to the task; the only thing that worried Ray was that he would trip and take one of us down with him. We got our heads together and decided that we should worry about getting the training right, having a laugh, and accepting whatever may happen along the way. With that in mind, we ran a couple of laps on the track, just to see how we would get on.

The first issue that came up was staying in contact with each other. We began by holding hands, but it became apparent very early on that this would not work. Sweaty hands and one-armed running would be unsustainable over twenty-six miles.       We tried a length of rope, but it was just too flexible. Helen came up with the idea of using a dog pull – the rubber bow-tie shaped toy. It was rigid when we needed it to be but would bend when the distance between us closed up. Perfect!

After a couple of training sessions on the track, we progressed to the road. What an eye opener that was (if you pardon the expression!) I felt like a cross between a sports commentator and a contestant on the Golden Shot (for those of you old enough to remember the show). I spent my whole time going “Left a bit, Right a bit, Puddle! Kerb coming up in three, two, one, down, three two, one up… …                     I had to be aware of every step, pothole, grating, pile of wet leaves, stray Jack Russell that crossed our path. Ray trusted us completely, which overwhelmed me. We progressed without mishap – other than the odd stitch from laughing too much!

Our next move was to participate in an actual road race. We chose a 10k, and duly rolled up to the start. We started at the back, just to give us space to get into our stride, but it wasn’t too long before we began overtaking runners. This highlighted another issue. When running in a crowd, you can’t always see the ground in front of you. This meant that both our instincts and reactions had to be quick to avoid any last-minute hazards. Water stations were an issue too, but with two guides, one of us could stay with Ray while the other grabbed drinks for us all. There were other practical difficulties too. With two female guides, we were very grateful to our fellow male runners who were happy to assist with bathroom breaks and locker rooms visits.

All too soon the day itself dawned, and we assembled, bright and early in Greenwich Park. Helen began by trying to describe the scene, but gave up when Ray and I fell about laughing; it wasn’t so much her “schoolteacher” manner, but the fact that she was pointing to landmarks as she described them. We had discussed such things in the bar after training on many occasions – how common expressions suddenly seem tactless. “I see what you mean, or “look before you leap.” Ray always wanted to avoid the Fawlty Towers “don’t mention the war” scenario, where everyone tried not to mention the fact that he was blind. It was a fact, not a judgement of him.

Early on Helen had been mortified having spent half an hour being teased by Ray because she had spent large sections of our run stopping to salute lone magpies. She turned to him and said, “so what do you do when you see one magpie?” There was a pregnant pause before he grinned answered: “Say Hallelujah I suspect!”

The start was always going to be problematic; Thirty-five thousand people milling around, kit bags to get onto lorries, finding the portaloos, collecting bottles of water, and all the general pre-race rituals. We positioned ourselves early and allowed the assembled masses to gather around us. Tannoy announcements kept us up to date with the progress of the race. An ironic cheer went up when it was announced that the elite runners had gone past the three-mile mark when many of us had yet to take our first steps.

The race unfolded slowly. We walked much of the first mile, as the sheer volume of runners made it impossible to pick up speed. Eventually, gaps opened up, and we were able to settle into a comfortable pace.

To say that the terrain was variable would be an understatement. Between carpets and cobblestones, we all had to keep our wits about us. Water stations were a nightmare, with plastic bottles strewn across the course for several hundred yards. One wrong step and any one of us could have sprained an ankle. Due to a little luck and a lot of preparation, we survived without incident. Helen still insisted on keeping up the commentary (without the pointing), and Ray thought she was getting her own back when she described the rhinoceros running beside him. It wasn’t until we got him to stretch his hand out to the side and edged him over that he came into contact with our thick-skinned companion. The smile that spread across his face was a delight to witness. We were now officially surrounded by lunatics!

Our fellow runners were incredibly supportive. Helen had obtained some high viz vests. Ray’s clearly stated “blind runner”, and Helen’s “guide”. I wanted to run in a Scooby Doo costume and put “dog” on mine, but sadly they were only available in size 7-8 years, so I had to settle for “guide” on mine too. It just gave those running around us an opportunity to provide us with a little more space, and more importantly not to try to run between us.

We made it. We crossed the finish line arm in arm in slightly over 5 hours;

Picture of the three successful runners.
Helen (left) Ray (second left), Sue (far right)

Not my fastest time, but far and away my proudest moment. Ray kept thanking us, but in actual fact, it was his drive and enthusiasm that kept us going through those dark February mornings in the pouring rain when we were heading out for those long, long training runs. He never once faltered, never once complained. Every challenge was met with joy and devilment. We carried on running for a long while afterwards; anything from ten-mile road races to cross country – complete with styles, ploughed fields, and loose horses. The highlight had to be a ridiculous event, aptly named “Only Fools, Not Horses.” It is run over the cross country section of the three-day event course at Blenheim Palace – complete with jumps. Fortunately one of the burlier male runners joined our team; we would never have got over the jumps without his help. It was my turn to trust Ray as he braced himself at the top of the bigger jumps and reached down to help me over. The water jumps were extraordinary, but Ray handled it all like a well -trained thoroughbred. Princess Anne would have been proud of him!

We didn’t do it to prove a point. We just did it for the pure hell of it, and I have photos of us laughing so hard that we can’t stand up straight. Don’t get me wrong, I am not trying to belittle the enormity of the impact that losing his sight had on my wonderful friend; but without it I would never have met him, and would have lost the opportunity to understand the pitfalls that face so many visually impaired people have to negotiate on a regular basis. They say you should walk a mile in someone else’s shoes. We managed twenty-six, and for all but Ray it was a real eye opener!

Sue Karstens 2016


Accessible Florence

I’ve just returned from a short city break to the beautiful Italian city of Florence.

What made this trip so special was the fact that we’d managed to find an accessible apartment, right in the city centre, whose history went back to the 14th century. Most wheelchairs users don’t get much choice when it comes to accessible holiday accommodation, although this is slowly changing. Normally I have to stay in square box modern hotels with as much character as a drawing pin.

The accommodation we rented in Florence began life as an open market in the 14th century and was later converted into housing, and then more recently into seven apartments, our accommodation was on the ground floor and wheelchair accessible. Many of the period features have been

Searching for Utopia
Bronze of a man riding a turtle in Piazza delia Signora

retained, most noticeably the vaulted ceiling and exposed brickwork. To gain access from the street, we had to use the supplied split fold ramp but once up the only step, the accommodation was all on the level. We spent a very enjoyable and comfortable four nights in this historic apartment and would recommend it to anyone. Here’s the link

If you’ve ever been to Florence, you will know that there are some things about the place that make it unique. The first is that it’s stuffed full of the most extraordinary art, sculptures and historic buildings. Second, it has some charming restaurants, and other eateries and third the

Me in my chair with the bike attachment
Me in my chair with the Batec attached. Near the Pitti Palace in Florence

pavements and the roads, particularly in the pedestrianised centre of the city, are an absolute nightmare if you are on wheels. Fortunately, I took a manual wheelchair with a Batec bike attachment fitted to the front. Here’s the link With the bike attached
the small front wheel casters are lifted off the ground, and this meant that I was able to negotiate uneven and potholed pavements relatively safely and easily. If you are thinking of going to Florence, I would certainly recommend you use a wheelchair or scooter with big wheels.

Finally, and perhaps most importantly, every gallery and exhibition we visited in the old city were wheelchair accessible and free, so my wife and I were able to enjoy just about all that Florence has to offer without breaking the bank. Another thing that impressed me was the fact that in a number of galleries there were tactile replicas of some of the paintings, which enabled sight impaired people to get a sense of the works of art on display, it would be good to see more of this in the UK.

Be warned Florence is an overwhelming experience so you will need to pace yourself. Fortunately, there are plenty of places to sit and relax, and the food and wine make relaxing an even more pleasurable pastime.

Have a good week and here’s some news which might be of interest to you. Supplied by John Pring Disability News Service

Government agency ‘blocked attempts to expose abuse of bus access loophole’

Lib Dem conference: Party picks first Westminster candidate from all-disabled shortlist

Premier League clubs ‘will break access pledge’ despite billion pound transfer spree

Grammar school plans ‘ignore impact on disabled pupils’ 


Surprises and tragedy in equal measure.

At long last, the summer has arrived! Time to take off my fleece!

What an extraordinary few weeks it has been. First, we had all the drama of the Brexit vote and then all the carnage that followed. A new non-elected Prime Minister and Philip Hammond appointed as Chancellor of the Exchequer, Boris Johnson inflicted on the rest of the world as our Foreign Secretary with Nigel F and Michael Gove nowhere to be seen. I don’t have the time or the space to update you regarding the state of Her Majestys Opposition! Alongside all of this mainland Europe and the USA, witnessed multiple shootings and stabbings, some clearly connected to terrorism others attributed to mental health issues.

More recently in Japan 19 learning disabled people were murdered, and 25 others were seriously injured by Satoshi Uematsu, a 26-year-old care worker who gained access to the residential setting where they lived. It came to light shortly after these murderous attacks that Uematsu had a history of mental health difficulties. Uematsu declared

A table with flowers on it outside the residential care setting in Japan.
A person places flowers on a table outside the care home.

his hatred for the 800 million people with disabilities across the world, saying they should be exterminated, and the cost of caring for them should be spent on other things. It is alleged that he supported Adolf Hitler’s views on eugenics and had written to Japanese officials volunteering to kill disabled people as they were a drain on society.

These horrific incidents have done nothing to enhance the way the public views disabled people, particularly those who rely on the state for their support or those who are trying to manage a complex mental health condition. Now more than ever we need to reinforce the fact that most people with mental health conditions are not violent and that disabled people, in general, can and do make significant and valuable contributions to our society.

Finally just an update; as most of you know, I’ve reunited with my old chum Simon Minty and together we are having a lot of fun putting together a regular podcast. If you’d like to take a listen please visit us at  Phil and Simon Show

And after, all that here are some news stories that might interest you. As always these are provided by John Pring

Embassy vigil will show solidarity with Japanese victims

Government’s hate crime plans unforgivable failure on disability

Rebooted “Disability Confident’ shockingly bad

Concern over Mordaunts ‘troubling’ appointment as Disability Minister




Whatever happened to innovation?

Earlier this month I made my annual pilgrimage to the Mobility Roadshow, this year held at the home of British motorsport, Silverstone. On arrival, I bumped into a couple of old friends, one of the reasons I go. They recounted horror stories about parking a long way from the exhibition halls and having to wait for over an hour for wheelchair accessible courtesy buses.

Picture of part of the circuit at Silverstone and one of the Exhibition halss
Silverstone racing circuit

Note to organisers; if you organise a major event where vast numbers of wheelchair users are likely to attend then locate parking close to the venue, preferably not on grass, if this isn’t possible then find another site!

After spending an hour familiarising myself with the layout of the Show, I began the search for the new kit. You know the sort of thing, wheelchairs that will climb bridlepath styles, powered wheelchair batteries that last a year and weigh less than a kilo, solar powered accessible vans, scooters that elevate so you can reach the top shelves in the supermarket. Sadly none of this was in evidence. More of the same old stuff, being demonstrated by less than enthusiastic sales teams who had an air of “I wish I were somewhere else” about them.

There was one headline grabbing piece of kit, called the Genny. As manual wheelchair users, we know how easy it is to get our small wheels stuck in pavement cracks or tramlines, the joy of dog poo on our hands, getting soaked because we can’t wheel around and carry a brolly.

The Genny is designed to eliminate these problems. It is a two wheeled powered device, based on the Segway, it’s full of gyroscopes and smart tech which enables the user to turn on a sixpence (remember those!). It climbs kerbs, goes across fields, you can carry an umbrella while holding hands with a loved one,  and, most importantly, you look cool while you’re doing it. There is only one tiny little drawback the Genny cost around £13,000!

All in all, I found the Show somewhat disappointing, it felt jaded and lacked pizzazz and excitement. If the organisers want to ensure we’ll all come back next year, they must find ways of encouraging inventiveness and innovation. They could make a start by reducing the costs for smaller companies so that they can afford to rent stands to showcase their products.

Now where can I lay my hands on £13,000?

Almost forgot, here are the links to some interesting disability stories.

Baroness Campbell urges disabled people to stay in the EU

Disability confident attracts just 40 mainstream private sector partners in 3 years

Phil and Simon Show

Simon preparing to record the show
Simon preparing to record the show

It seemed inevitable that one day there would be a podcast of me chatting with my buddy Simon Minty about all things disability. Simon and I have been having these conversations for nearly twenty years, until now, unrecorded, while working, travelling or just hanging out together.

We have very different backgrounds, we are from different generations, we have different politics and contrasting comfort zones. We both share a commitment and passion for equality, fairness and social inclusion of disabled people and have spent many years working to achieve it or at least see some progress.

The great thing about our discussions are that we know one another so well and respect each other so don’t have to pull any punches now. Sometimes we’re considered, at times, we just shoot from the hip. We can make each other laugh and still, after all, this time, make the others jaw drop with a single comment.

We have already recorded two shows, and they are available online. We’ll continue to record one each month until we run out of things to say. Which means they’re going to keep coming for quite a while… we will mix it up from time to time and invite some guests on the show.

Phil getting ready to record
Phil ready to record

Our latest show discusses the merits or otherwise of being disabled in the US compared to the UK. Is it just about attitude? Do you tip if someone is providing a service related to your disability? Why do some disabled people not use equipment that would improve their life? And if disability kit can ever be cool? And if so, who to and where do you find it?


You can subscribe, follow us, get in touch, etc. with via the various links below.

Phil and Simon Show on Itunes

Phil and Simon Show on Audio Boom

Phil and Simon Show on Twitter

Phil and Simon Show on Facebook

You can email us at

In Awe of the NHS

Hello once again.  The last time I wrote to you I was waxing lyrical about my Caribbean cruise, well, it didn’t take long for me to come down to earth with a bump.

In the final few days of our cruise we learned that my wife’s mother Jean, a lovely 89-year-old was suddenly taken seriously ill. At almost the same time, I took to my bed with the worst case of flu I have ever experienced. Four days under a duvet and then as weak as a kitten for three weeks afterwards. My illness meant that I couldn’t visit my mother-in-law as often as I would have liked.

Sadly after two months of struggle Jean finally departed this life and we were left to remember a loving, supportive, generous, and caring woman. Her passing caused me to reflect on the NHS and the care that she had received from all the staff who looked after her.

A picture of Jean and her granddaughters wedding
A picture of Jean at her granddaughter’s wedding

Jean spent two months in the hospital, first in intensive care and then on surgical and rehabilitation wards. What you notice immediately, when you spend any time in an NHS hospital, is that the doctors and nurses come from all over the world. (Where would the NHS be without immigration?) The second thing that is very obvious is the high number of agency staff working on the wards. The nurses seemed to change on a daily basis so it was rare to see the same person two days running. This inevitably led to things not being followed through, presumably because the handover between shifts with so many ‘temporary’ staff was less than perfect. An example of things falling through the cracks was that monitoring food and liquid intake were sometimes not recorded, this led to increased anxiety for us as we couldn’t tell whether Jean’s lack of physical improvement was due to not drinking or eating enough.

Another significant issue facing staff was the high turnover of patients, this was quite extraordinary and the beds on all the wards that Jean spent time on were never empty for long. Many of the patients were elderly and very confused and the nursing staff in particular needed to exercise extraordinary sensitivity in dealing with some of the challenging behaviours that they exhibited. I was in awe of their professionalism and patience.

As many of you know I have been involved in campaigns to prevent assisted dying being made legal in the UK.  I was concerned that the end of life care that Jean might receive would not be of the highest standard given the demands on the staff and other resources, my concerns were unjustified.

In the final days of Jean’s life, everything that could be done to keep her pain-free and comfortable was done. On the night of her death, she was moved to a side room where we could be with her. Her passing was peaceful and dignified, and I’m incredibly grateful to everyone who was involved in making this possible.  We are indeed a fortunate nation to have the NHS and the dedicated people who work in it.

Picture head and shoulders of Blake the black Labrador
Our 13-year-old black Labrador, Blake RIP

Finally just to put a tin lid on what has been a tough few weeks our 13-year-old Labrador, Blake, collapsed, despite the vet’s best efforts there was nothing that could be done to help him. He too departed this life with dignity, and we miss him but differently.

Can’t wait for May!!

Here are the links to the latest news. I hope they are of interest.

Capita faces fresh call to be stripped of PIP contracts

Latest ‘reckless’ DSA reforms could leave disabled students without support

Fears over government links as equality watchdog launches welfare probe

Government ‘must see disabled people as innovators and contributors’

Rail access improvements set for delays… along with nearly £50 million funding

All news provided by John Pring Disability News Service

Planes and Boats and the search for winter sun

I’ve just returned from a lovely break in the Carribean. Winter in the UK or somewhere nice and warm? Not a difficult decision! Two weeks cruising on a luxury liner being spoilt rotten sounds like a good idea. Well like everything there is another side.

First you have to get to the Carribean. This usually involves a long haul flight of around eight hours on an aircraft that lacks accessible toilets. One of the fundamental rules of flying long distances is to drink plenty of water. Not advisable if you can’t visit the bathroom. Our flight out to Barbados was nine and half hour long, the seats lacked and any form of adjustment and were extremely uncomfortable. Once we landed I had to wait an hour to be off-loaded from the plane. We were then taken straight to the ship, bypassing customs and the airport terminal toilets; the journey lasted another forty-five minutes. Embarkation took around half an hour, so I went eleven and three quarter hours without using the loo! Much self-control and crossing of legs is the name of the game

Cruise liners are brilliant from an access point of view, and P&O’s ship the Azura is no exception. She has spacious wheelchair accessible cabins with roll in showers,  lift access to all decks, swimming pool hoists making swimming possible for the most severely disabled passenger.

Picture of cruise ships berthed in the Dominican Republic
Cruise ships berthed in the Dominican Republic

The trouble begins when you go ashore. Our ship was able to berth in all the places we visited, so there was no need to use tender boats. To appreciate the Caribbean islands you need to venture inland, unfortunately, very few tour buses are wheelchair accessible. The result is that mobility impaired people are forced to stay close to the port to while away their time in endless identical shopping malls. P & O do provide a list of available tours but on our cruise, the accessible buses that were available only had one wheelchair space. I saw, at least, a dozen wheelchair users so this provision was wholly inadequate. In one location they had provided a shuttle bus to get passengers from the ship to the town. Unfortunately, those people using wheelchairs, but who could walk a little, were refused access because there was nowhere to store the wheelchair. It seemed a little ironic that the very people the shuttle was designed to help were excluded from using it.

I do understand some of the places we visited do not have the resources to provide the kind of accessibility we have come to expect in the UK but what I find puzzling is why P & O won’t do more to cater for the increasing number of mobility impaired passengers. The last straw was we

Sign in St Maarten advertising accessible tours
Sign in St Maarten advertising accessible tours

left the ship in St Maarten to see a kiosk a hundred yards from the port entrance advertising wheelchair accessible tours.

Many disabled people find cruising one of the best ways of taking a holiday, it is possible to see places that you might not otherwise be able to visit. I’d be interested to hear about your experiences so please send me your comments and I will do my best to see they are passed on.

To end on a more positive note the sun shone beautifully, my tan has improved, my waistline has expanded as a result of the food being plentiful and excellent, and we met some fascinating people.

Here are some links to this week’s other news. I hope you find them of interest.

Government agrees four more years of ILF transition cash for councils

Maximus ‘has falsified results of fitness for work tests’, says MP

Anger at Osborne’s working-age benefits freeze

Police duo jailed over failure to protect disabled murder victim

News provided by John Pring at



How are you?

How long has it been? A year has turned, Christmas has passed and I have a new website. We have been working on the new site for a couple of months, and I’d love to hear your thoughts. 

I’d be particularly interested to hear about any accessibility issues. As you know, websites are never perfect for everyone, but I’m determined to make mine as welcoming and as accessible as possible so do let me know.

Graeme Whippy MBE doing what he loves
Graeme Whippy MBE doing what he loves

My thanks to Graeme Whippy who built my previous site and who I see was awarded an MBE in the New Years Honours list, See what happens if you design my website! Tricia Howey from Narus Productions designed this one so you’d better get ready for a Dameship Tricia!

Susan Scott-Parker OBE
Susan Scott-Parker OBE

I spent a very happy evening on Thursday celebrating the work of Susan Scott-Parker, who, as many of you will know by now, has moved from her role with the Business Disability Forum and is now the CEO at Business Disability International. Kate Nash (not the singer!) organised an informal get-together of past and present colleagues and associates, and we all shared a story or anecdote that spoke about our work or involvement with Susan. A mixture of funny and moving tales but all very entertaining. Susan has done so much to change the landscape for disabled people and employers, so it was a very fitting tribute and thoroughly deserved. 

Severely damaged wheelchair
Severely damaged wheelchair

Once I’ve finished writing this I’m going to start focussing on packing for my Carribean cruise. Yes, I know it’s a hard life! I don’t know about you, but I’m heartily sick of the weather. I’ve not seen as much rain since our house was flooded a couple of years ago. So the Carribean here we come. The only concern I have is whether my wheelchair will arrive in Barbados and if it does, will it be in one piece. You might have seen my recent Twitter post about a severely disabled athlete who had his £20,000 wheelchair demolished by baggage handlers. Fortunately, the story attracted a great deal of attention on Facebook, and the airline was ‘shamed’ into paying compensation. Here’s a link to the story Airline forced to pay compensation
I hope Barbadian baggage handlers are a little more careful with mine. Now where’s the suntan cream, better take the Factor 50? Will tell all on my return.

Now here is this weeks news which I hope is useful to you.

Maximus-owned Remploy slashes pay of disabled experts by half 

The care watchdog has allowed a US outsourcing giant to slash the pay of disabled people by more than half when it takes over two contracts to manage service-users who work as expert advisers on care home and hospital inspections. 

Council’s ‘wicked’ care cuts are‘like social cleansing’, say service-users

Disabled and older people have compared a council’s plans to cut £5 million from its adult social care budget to “social cleansing”, and have accused it of “treating people no better than animals in Longleat”. 

Disabled people are falling through holes in local welfare safety net, warn MPs

A committee of MPs has called on the government to stop local authorities discriminating against disabled people who need financial help following the introduction of the “bedroom tax”.The work and pensions select committee’s report on the local welfare safety net – which focuses on England – warns that many councils are failing to follow government guidance when deciding whether disabled people should be awarded discretionary housing payments (DHPs).

 Disabled MP’s jobs warning to government: ‘Do not under-estimate prejudice’

A disabled Conservative MP has warned the government not to underestimate the difficulty of achieving its aim of halving the disability employment gap, because of the extent of “prejudice” faced by disabled people. 

News provided by John Pring at

UN investigators begin taking on ‘rights violations’

UN investigators begin taking on ‘rights violations’, Government hides information on death of Michael O’Sullivan, WRAG cuts will ‘lead to more tragedies’, Activist loses appeal over’ 20 metres PIP consultation, Shocking survey results

How are you all? On good form I hope. As I write, celebrations are beginning to take place in the USA to mark the 25th anniversary of the Americans with Disabilities Act. Our own legislation, previously called the Disability Discrimination Act, will be 20 years old in a few weeks time. This got me thinking about the changes that have occurred in that time, but rather than just focussing on some of the major improvements that have taken place, I’ve been reflecting on some of “smaller” but no less significant things that have changed.

Back in 1995 the smartphone hadn’t been invented, the Blackberry came along in 1997. Email was still in its infancy and letters and memos were the usual way to correspond. The Internet was only five years old, Google launched in 1998, so we visited the library to do our research. We used acetates and overhead projectors for presentations; PowerPoint was an expensive and somewhat unusual alternative. Projection equipment lagged behind the software.

It was quite acceptable for organisations to expect disabled people to provide talks or presentations for free. In fact, for many, it was quite a shock to be asked for money! We often arrived to give a presentation, only to find the venue or the stage itself was inaccessible. Sign language interpreters were a rarity at such gatherings. Audiences were still surprised to see a disabled person providing the speech and were even more surprised when the disabled person’s facilitator did the talking. We talked about disability awareness not disability equality or confidence.

So much has changed, today disabled people are more likely to travel on trains and buses, have access to many more buildings, stand a better chance of getting a job, independent living is seen as a right rather than a luxury. The technologies may have changed, our expectations have certainly increased but as you’ll see from this week’s news, the need to change hearts and minds continues.

Have a good week and here’s to the next twenty years!

News Roundup

UN investigators begin taking evidence in UK on ‘rights violations’
A team of United Nations investigators has this week begun a two-week visit to the UK as part of an inquiry into allegations of “systematic and grave” violations of disabled people’s human rights.

Disability News Service (DNS) revealed in August 2014 that the UK appeared to have become the first country to face a high-level inquiry by the UN’s committee on the rights of persons with disabilities (CRPD).

The committee said last summer, when approached by DNS, that it was not allowed to say whether the inquiry was underway, and that level of secrecy has continued with this month’s visit, with those giving evidence asked to sign confidentiality agreements.

But some details of how the inquiry into breaches of the UN Convention on the Rights of Persons with Disabilities (UNCRPD) is proceeding have emerged.

DNS understands that a team of about six UN staff has arrived in the UK, including two disabled CRPD members, and will visit London, Bristol and Manchester, as well as Scotland, Wales and Northern Ireland.

They are due to meet parliamentarians, disabled people’s organisations, civil servants, representatives of local authorities, academics and senior figures from the Equality and Human Rights Commission.

They will also hear direct evidence from scores of individuals about the impact of government austerity measures, including former users of the Independent Living Fund (ILF), whistleblowers and disabled activists.

Among the issues being raised are believed to be the government’s decision to close ILF; cuts to legal aid; benefit cuts and sanctions, including the impact of the discredited work capability assessment; the severe shortage of accessible, affordable housing; the impact of the bedroom tax on disabled people; cuts to social care; and the rise in disability hate crime.

Anne Pridmore, a disabled activist and former ILF-user who did not sign a confidentiality agreement but was due to give evidence about the impact of the ILF closure, said: “I am going to say that I am pissed off with being messed around. It is affecting my mental health.”

Nearly four months after the ILF closure, she still does not know if she will be able to stay in her own home, and cannot tell the six personal assistants who work for her whether they will soon be out of a job.

She said: “It is all because of this dreadful government who have stopped the ILF and put nothing in its place. Social care is in a terrible mess.”

Pridmore praised the role played by Disabled People Against Cuts (DPAC), which triggered the inquiry after becoming increasingly concerned by the disproportionate impact of the coalition’s cuts on disabled people.

She said she hoped the inquiry “embarrasses the government”, and added: “Hopefully it will give people confidence that something is being done to support them.”

Another disabled activist said: “I’m really happy that someone is listening, yet absolutely horrified by my own and so many other people’s situations and health conditions worsening and the lives being devastated as a result of the closure of the ILF and all the other cuts being made as a result of the ‘welfare reforms’ and the lie of ‘austerity’.

“Some of the stories I’ve been hearing are absolutely shocking and utterly heart-breaking.

“Knowing the UN are investigating is making me feel hopeful, despite everything.

“I really hope the UN will not just gather enough evidence to prove this government is guilty of human rights abuses but that it will then be able and willing to act decisively in order to help bring an end to this cruelty and abuse.”

She also praised DPAC, as well as Inclusion London, which has been closely involved in organising parts of the two-week visit.

A Department for Work and Pensions spokesman said: “We strongly reject the allegations made by DPAC.

“The UK has a proud record of furthering the rights of disabled people, with the principles of the UN convention at the heart of its approach. We continue to spend around £50 billion a year on disabled people and their services.”

The inquiry has taken place under the convention’s optional protocol, which allows individuals and groups who are victims of a violation to submit a complaint to the CRPD about any state, like the UK, that has signed up to both the convention and the protocol.

The deadline for evidence submissions to CRPD is believed to be 31 October.

Government hides information on death of Michael O’Sullivan

The government is refusing to release information that would reveal which ministers and civil servants decided how to respond to the death of a man who killed himself as a direct result of being found “fit for work”.

Disability News Service (DNS) revealed last month that a coroner had demanded government action after an inquest into the death of Michael O’Sullivan, from north London.

The coroner, Mary Hassell, wrote what is known as a prevention of future deaths (PFD) report, and sent it to the Department for Work and Pensions (DWP), because she said there was “a risk that future deaths will occur unless action is taken”.

O’Sullivan had severe mental health problems, including anxiety, depression and agoraphobia, and expressed suicidal thoughts in his ESA application, but medical evidence from three mental health professionals was ignored in the benefits assessment process.

It is believed to be the first and only time a coroner has used a PFD report to draw attention to flaws in the discredited work capability assessment (WCA) system, and the only time a coroner has directly blamed that system for a death.

In its response to Hassell’s report, DWP said it planned to issue a reminder to staff about guidance on such cases, but appeared to make no further suggestions for how to prevent further deaths.

After uncovering the report, DNS submitted a request under the Freedom of Information Act, asking for the name and job title of the most senior DWP civil servant to read and act on the PFD report and the action they recommended, as well as the names of ministers who were shown the report, and the action they took.

In response to the request, a civil servant in DWP’s ESA [employment and support allowance] and WCA policy division confirmed “that we hold information falling within the description specified in your request”.

But he or she said it would be too expensive to comply with the request, because it would take the equivalent of one civil servant more than three-and-a-half days to produce the necessary information.

After receiving that response, DNS asked DWP’s press office to explain why it would take so long to produce such basic information (the case has received wide publicity over the last month, and has been mentioned in parliament and across mainstream media).

A DWP spokeswoman said: “People can ask for a review of the response to their FOI.”

DNS has now asked the DWP to review its freedom of information response.

Meanwhile, two opposition MPs have raised concerns about the Michael O’Sullivan case in parliament.

Their comments came in a debate on the government’s welfare reforms, secured by the Labour MP Carolyn Harris, but which was not attended by a single Conservative backbencher.

Jim Shannon, the DUP’s shadow spokesman on health and equality, said the case had shone a spotlight on the “utter disgrace that is the work capability assessment in relation to people with mental health problems”.

He said: “Despite providing reports from three doctors, including his GP, stating that he had long-term depression and agoraphobia and was unable to work, Michael O’Sullivan was taken off [incapacity benefit] and placed on jobseeker’s allowance.

“At the inquest last year, it was found that he killed himself as a direct result of that decision.

“According to the coroner, Mary Hassell, ‘the intense anxiety which triggered his suicide was caused by his recent assessment by the Department for Work and Pensions as being fit for work and his view of the likely consequences of that’. That cannot be allowed to happen again.”

Eilidh Whiteford, the SNP’s shadow Westminster social justice and welfare group leader, said the death of Michael O’Sullivan was not an “isolated case”.

She pointed to the death of Ms DE, whose suicide in 2011 was the subject of an investigation by the Mental Welfare Commission for Scotland.

She took her own life after scoring zero points in a WCA “made in the absence of an ESA50 [application] form and without any additional information from her clinicians.

“The only information her assessor had about her condition was a single word, ‘depression’, which in her case masked a long and very complicated psychiatric history.

“Both her general practitioner and her consultant psychiatrist considered her unfit for work at the time of her death, even though she had worked for most of her adult life and wanted to go back to work.

“The distress caused by her benefits assessment may have played a role in her suicide. The investigation concluded that there was ‘no other known trigger’ for the events that took place.”

Whiteford said there were likely to be other cases like those of Ms DE and Michael O’Sullivan.

The minister for disabled people, Justin Tomlinson, did not mention the cases of Ms DE and Michael O’Sullivan in responding to the debate.
WRAG cuts will ‘lead to more tragedies’, says Abrahams

Planned cuts to out-of-work disability benefits will lead to more “tragedies” in which disabled people will lose their lives, Labour’s new shadow minister for disabled people has told fellow MPs.

Debbie AbrahamsDebbie Abrahams, a former public health consultant, was speaking as she and fellow opposition MPs
failed in their first attempt to throw out plans to cut support for new claimants placed in the work-related activity group (WRAG) of employment and support allowance (ESA) by nearly £30 a week from April 2017.

Abrahams pointed to the government’s own figures, which showed that the death rate of people on out-of-work disability benefits had increased – in comparison with the general population – from 2003 to the period between 2011 and 2014.

She pointed out that people in the WRAG were 2.2 times more likely to die than the general population.

She said: “The innuendo that people with a disability or illness might be ‘faking it’ or are ‘feckless’ is quite frankly grotesque and belies the epidemiological data.

“Incapacity benefit and ESA are recognised as good population health indicators. I can say that as a former public health consultant. I have experience of this and I have worked in this field.

“The release of the government’s own data, which show that this group are more likely to die than the general population, proves that point.”

Abrahams said the government had “continually maligned, vilified and demonised” benefit claimants, while its use of words like “shirkers” and “scroungers” had led to these terms being used far more often in the media.

She said: “This group of people are vulnerable and need care and support, not humiliation, from us.

“Once again the cart is being put before the horse: make cuts in support and cross your fingers that something turns up for disabled people.”

Priti Patel, the employment minister, said the work-related activity component was introduced by the last Labour government “as an incentive to encourage people to participate in employment”.

She said: “Clearly, we know that that has not happened. We are therefore reforming our approach with DWP, through our jobcentres and work coaches, to support individuals to get back into work.”

She added: “Through all our welfare reforms we have made it clear that we will continue to protect and support the vulnerable.

“That of course includes those who have terminal illnesses or people with progressive illnesses who are unable to work.”

During discussion of a related clause of the bill, Patel added: “It is very easy for Labour members to claim that the [WRAG] measure is about taking money away.

“It is about providing the right kind of support for people with health conditions and disabilities.”

After Labour MP Naz Shah asked her if “the number of people who have committed suicide after sanctions have affected their mental health problems is acceptable”, Patel said that there was “no causal effect at all”.

Neil Coyle, a newly-elected Labour MP and a former director of Disability Rights UK, told Patel: “Some 440,000 disabled people have to pay the bedroom tax… and benefit rates have been frozen, including the vast majority of employment and support allowance benefit paid to disabled people.

“We have also had the change to disability living allowance.

“It is very frustrating to hear ministers continue to claim that disabled people have been protected when they clearly have not.”

Abrahams said the cuts to WRAG payments would affect 500,000 disabled people, according to the government’s own estimates, and she pointed to a “whole host” of other cuts to social security support for disabled people since 2010, as well as cuts to social care.

She said the UK was currently ranked only 19th of 32 European states on how much it spends on disabled people (1.3 per cent of GDP), and that, by 2021, about £640 million a year will have been cut from disabled people’s support through the WRAG cut, while only £100 million a year of that would be spent on “unspecified” assistance to help them into work.

She told the committee: “With this cut to the ESA WRAG support without anything to replace it, the government are condemning more people with disabilities and their families to living in poverty, and I predict, unfortunately, that more tragedies will undoubtedly happen.”

The SNP’s Hannah Bardell said the proposal to reduce the WRAG payment by just under £30 a week was “completely immoral and makes absolutely no sense”.

She said: “ESA claimants have always received a higher rate than those on JSA, because they typically take longer to move back into work, as they face additional barriers.”

She said: “The Conservative manifesto committed to halving the disability employment gap, but it is my party’s contention that the reduction in the ESA WRAG component will in fact present more barriers to those with disabilities who are trying to get back to work.”

The part of the bill that will cut the WRAG payment was passed by the committee by nine votes to eight.

Activist loses appeal over ‘unfair’ 20 metres PIP consultation

An activist has lost his bid to prove that a public consultation on plans to tighten eligibility for the new disability benefit was unlawful, but says his legal case has still exposed the government’s “callous disregard for disabled people”.

The court of appeal ruled this week that the Department for Work and Pensions (DWP) had carried out a proper consultation on its plans to slash the qualifying distance for the higher rate of mobility support from 50 metres to just 20 metres.

Campaigner and blogger Mx Sumpter failed last year in a judicial review of the consultation process, but appealed that decision.

The appeal was heard in July this year, and this week the court of appeal ruled that DWP’s consultation was not unfair or unlawful.

Sumpter, who can only walk a few metres with a stick, and otherwise uses a wheelchair, was assessed as eligible for the higher rate mobility component of disability living allowance (DLA), and uses that to lease a car through the Motability scheme.

But Sumpter fears losing the higher rate entitlement when transferring to the new personal independence payment (PIP), and consequently losing access to a Motability vehicle.

Under DLA, someone is eligible for the higher rate if they cannot walk more than 50 metres, but under the new rules for PIP – which is gradually replacing working-age DLA – this walking distance criteria has been set at just 20 metres.

DWP consulted on the introduction of PIP in 2012 but did not mention its plans to cut the criteria from 50 metres to 20 metres until after the consultation had closed.

Last year, a judge suggested that if the consultation process had stopped at this point, he would probably have found it unfair and unlawful.

But after Sumpter’s judicial review was issued, the disabled people’s minister Esther McVey carried out a second consultation, limited just to looking at the 20 metres measure.

When McVey’s ministerial successor, Mike Penning, published his response to the consultation, he made it clear that the walking distance criteria would remain at 20 metres.

Sumpter’s legal team argued that this second consultation was irrelevant because the decision had already been made.

But the court of appeal concluded that the government had approached the second consultation “with an open mind”.

Lord Justice McCombe, one of the three appeal court judges who heard the case, said in the judgment that Sumpter’s argument would prevent decision-makers in the government’s position from “trying to put right errors in consultation processes that are pointed out to them by looking again at the areas of criticism”.

He added: “As I understand the law, consultation has to be fair; it does not have to be perfect.”

Sumpter, who blogged about the judgment today (Thursday), told Disability News Service: “I am disappointed that we were unable to change anything about PIP, but I am glad that we tried.

“The DWP imposed a cruel trade-off on disabled people in increasing support for some disabilities only by cutting help for those with physical impairments.

“In forcing the government to defend this we exposed their callous disregard for disabled people and our ability to go about our lives.

“It certainly does not fit in to their mantra that disabled people will work their way out of poverty, since for many people the loss of support will mean they can no longer work, or even leave their homes.”

Alastair Wallace, a specialist public lawyer at Irwin Mitchell, who acted for Sumpter in the case, said: “Our client originally challenged the consultation during the creation of the PIP system and while our challenge was unsuccessful, we still believe that the current proposals are unfair.

“We are disappointed by this outcome and our client’s focus will now be to ensure that the new scheme is properly implemented.”

A DWP spokesman said: “We are pleased that the court of appeal has unanimously endorsed the decision of the high court that the consultation process was fair and lawful.

“We remain committed to the full rollout of PIP, a benefit which helps disabled people to live independently by ensuring support is focussed on those who need it most.”

Only five individuals out of the 1,142 organisations and individuals who took part in the second consultation agreed with the government that the walking distance criteria should be set at 20 metres.

Government figures predict that, with the criteria set at 20 metres, the number of people receiving higher rates of mobility support – and therefore eligible for a Motability vehicle – will plunge from 1,030,000 (if DLA had not been replaced by PIP) to just 602,000 by 2018.

They also predict that 548,000 of the 892,000 working-age people who were receiving the higher rate of the DLA mobility component in February 2013 will not receive the enhanced mobility rate of PIP once they are transferred to the new benefit.

Shocking survey results show ‘yawning gap’ between Care Act and real life

Nearly half of disabled people receiving care and support from their local authority say their quality of life has fallen in the last year, despite major new legislation designed to boost their well-being, choice and control.

The survey of 399 disabled people was carried out by the Independent Living Strategy Group (ILSG) – some of whose members were part of the independent living movement in the 1970s – as part of a report assessing the impact of the Care Act 2014 on choice and control.

The group was set up by a broad range of disabled activists and disability organisations concerned about the potential impact of welfare reform and cuts to public services on independent living, and the government’s failure to follow through on its 2010 pledge to monitor the implementation of Labour’s independent living strategy.

Members of the group include Baroness [Jane] Campbell, the leading activist John Evans, the Spinal Injuries Association, Inclusion London, Scope and Disability Rights UK.

Their report was funded and published by In Control, the charity which helped develop the idea of personal budgets*.

ILSG members wanted to find out how local authorities were following “the spirit and letter of the Care Act and its statutory guidance in seeking to optimise choice and control”, which they say is “fundamental” to the Care Act’s “core purpose” of helping people achieve the outcomes that matter to them.

More than 45 per cent of those surveyed said their quality of life had reduced over the past year, including 18 per cent who said it had fallen significantly.

Almost 30 per cent said they had experienced a reduction in choice and control over their support in the past year, while only eight per cent said it had increased.

And nearly 30 per cent of respondents said restrictions had been placed on their use of direct payments or personal budgets.

The report warns that social care spending by local authorities had already fallen by £4.6 billion from 2010-11 to 2014-15 – a real terms cut of 31 per cent – while the government’s imminent spending review had “opened the door to even deeper cuts in the years to come”.

Some councils have introduced restrictions on how disabled people can spend their personal budgets, such as banning them from using them to pay for gym memberships, or for personal assistants to accompany them on outings.

Others have imposed a “cost ceiling”, which means the council will pay no more for independent living than the cost of a residential care placement, despite Care Act guidance making it clear that such practices are unacceptable.

The report calls on central government to ensure that funding to local authorities is “sufficient to enable them to meet their statutory obligations as a minimum, let alone the broader goals and aspirations of the Care Act in respect of prevention and well-being”.

But it also says that there are many things councils can do, “irrespective of their financial position”, to promote choice and control and “strive to meet the letter and spirit of the Care Act 2014”.

Jenny Morris, one of the report’s authors and another ILSG member, said the survey results were “very shocking”.

She there was a “yawning gap between the welcome principles of the Care Act 2014 and what is actually happening to older and disabled people”.

She said: “The whole value system behind personal budgets is incompatible with the massive reduction in expenditure on social care which local authorities are facing.

“There are some local authorities where a significant proportion of social workers and managers are not signed up to the choice and control agenda, but any progress is being made almost impossible by the massive reductions in the funding available.”

She said: “Personal budgets were supposed to enable everyone who needed social care support to have the kind of choice and control that was previously only open to those receiving direct payments.

“Instead, they have been rolled out in the context of a major financial crisis facing adult social care, and the result is not only a reduction in choice but also a decrease in the quality of people’s everyday lives. This is the government’s responsibility and they must act.”

She said ILSG would continue to monitor the state of independent living, including through future surveys.

And she called on councils to “make it clear to government that the current financial climate is incompatible with what they are required to do, according to the Care Act and the statutory guidance that accompanies it”.

Sue Bott, deputy chief executive of Disability Rights UK, added: “Local authorities might argue that it is early days in the implementation of the Care Act, but if you don’t start as you mean to go on then the spirit of the act will never be implemented.

“This report demonstrates, and the calls to our advice line also show, that disabled people are being denied choice and control over how support needs are met and that independent living is being fundamentally undermined.”

*A personal budget is a sum of money allocated by a local authority to meet a person’s care and support needs, while direct payments allow a disabled person to take such a care package as a cash payment

News provided by John Pring at

IDS announces fitness to work U Turn

IDS announces fitness to work U Turn, Choice and Control plunge, Deaths of Benefit claimants data released, NHS caps on continuing healthcare

So how was your summer? The August Bank holiday is done and dusted and youngsters will be back at school within days. It all goes so quickly!

Two things to tell you. First Sue and I visited the Edinburgh Fringe, we drove up in our motorhome and camped, along with many others, on a site in the suburbs. My good friend Simon Minty and his pal Steve Best returned to the Fringe to celebrate the tenth anniversary of Abnormally Funny People ( The show has new acts as well as some from the original 2005 line up, including Liz Carr and Tanyalee Davis. We had a great night with plenty of laughs and not a little angst. Great to see the new acts and remember how it all began.

One major change since the first show in 2005, we travelled to and from our campsite on a fully accessible scheduled Lothian bus! Couldn’t have done that ten years ago! Nice to sit on the bus at midnight surrounded by other bleary eyed Fringe goers, I felt like a proper commuter for once in my life.

The second snippet for you. I’ve just bought a Batec from Cyclone ( it’s an electric powered wheel which fixes to the front of my manual wheelchair and turns it into a trike, (see picture) which is capable of speeds of up to 20 kilometres an hour. On my first trip out, with our new dog Crumble, I managed to lose the dog and control of the Batec. I attempted to drive the bike up a short muddy incline in pursuit of the dog but only succeeded in turning the whole thing over. I ended up lying on a muddy track with the bike and chair on top of me. Nothing hurt except, of course, my pride.

Fortunately a group of people, out walking their dogs came to my rescue. They produced the classical opening remark, which I’ve heard so many times before and always baffles me, “Are you alright mate?”. I should have said “Yes of course, I love lying face down in the mud with a wheelchair on top of me!” I managed to restrain myself. Their second question was spot on “What would you like us to do?” They lifted me and the chair upright and then gave me a push up the slope. I thanked them for their kindness and then met Sue coming towards me with Crumble who had returned home having decided she was safer there than with me! Quite right too as it turned out!

Have a great week and take a look at this weeks news.

News Roundup

IDS announces ‘fitness for work’ U-turn that was five years in the making

Work and pensions secretary Iain Duncan Smith appears set to scrap the “fitness for work” test championed by successive Labour, coalition and Conservative governments, but there are fears that its replacement could prove even more damaging to disabled people.

Duncan Smith – in comments not included in a written version of a speech reported by mainstream media – said that employment minister Priti Patel would lead a review of the out-of-work benefit, employment and support allowance (ESA).

And he also appeared to promise that the work capability assessment (WCA), the much-criticised eligibility test for ESA, would be scrapped.

He was speaking just three days before his department finally published complex new figures on the number of people who died after being found “fit for work” following a WCA.

Tory, Labour and coalition governments have repeatedly given their support to the ESA system, since it was launched under Labour in 2008.

But Duncan Smith said, in the speech delivered this week to the thinktank Reform, that there was a “fundamental flaw” at the heart of ESA.

He said: “It is a system that decides that you are either capable of work or you are not capable of work.

“Two absolutes equating to one perverse incentive – a person has to be incapable of all work or available for all work.”

He added: “Someone may be able to do some work for some hours, days or weeks, but not what they were doing previously, when they first became ill.”

Duncan Smith said that ESA – and particularly the WCA – was at odds with the government’s new simplified working-age benefit system, universal credit.

He said: “The more personalised approach under universal credit… sits alongside a work capability assessment which sets the wrong incentives.”

He said a new system should be “better geared towards helping people prepare for work they may be capable of, rather than parking them forever beyond work”, and should be “focussed on what a claimant can do and the support that they need to be able to do it – and not just on what they can’t do”.

Duncan Smith’s comments appear to signal a major retreat from his party’s support for ESA and WCA over the last five years.

And they come less than two months after George Osborne announced, in his summer budget, that from April 2017 he was scrapping the extra financial support for new ESA claimants placed in the work-related activity group, a loss of about £1,500 a year per person, as part of measures that would cut £13 billion-a-year from the social security budget by 2020-21.

If Duncan Smith’s comments do mean an end to the WCA, it would mark a victory for disabled activists who have campaigned for five years for the assessment to be scrapped, despite repeated government insistence that it was fit for purpose.

Over the course of five independent reviews aimed at improving the WCA, Tory ministers have insisted that the WCA must stay.

In the government’s response to the second independent review of the WCA, in 2011, employment minister Chris Grayling said they would “make further improvements to the work capability assessment to ensure it continues to be fit for purpose”.

In his response to the third independent review of the WCA, in 2012, employment minister Mark Hoban said the goal was “continuous improvement”, and added: “We agree that the WCA ‘remains a valid concept for assessing… eligibility’ and that there is no evidence to suggest that the system is fundamentally unsound.”

Early in 2014, Mike Penning, then the minister for disabled people, responded to the fourth WCA review by welcoming the conclusion of the independent reviewer, Dr Paul Litchfield, that the WCA did not need to be scrapped.

Penning said: “In line with the government’s view, he has instead reflected that we need to make further changes but that these reflect our strategy of continuous improvement rather than radical overhaul.”

And just three months before May’s general election, responding to the fifth and final review, Mark Harper, Penning’s successor, insisted that the WCA was “integral to the government’s commitment to ensuring that as many people as are able to do so engage in employment and that those who cannot work receive the appropriate support”.

But now, in this week’s speech, Duncan Smith appears to have concluded that his government was wrong all along to support the ESA and WCA system.

He told the Reform event: “I want to place people at the heart of a system, and make the system work around them, rather than the other way round, as has been the case.

“It was this back-to-front approach which we had inherited, a system that people crashed into, and struggled to figure out too often.”

Disabled campaigner and researcher Catherine Hale, who wrote a well-received review on the failure of the ESA system to increase the number of disabled people in paid work, said: “I’ve always welcomed the idea of an assessment geared to what kind of work a person could do and what support they would need to do it, as Labour was promising before the election.

“But it would have to be based on the real world of employment, not the fantasy world of the current WCA, involving moving empty cardboard boxes and picking up pound coins from the floor.

“However, I’ll eat my hat if this government, after all its policies and rhetoric of blame and punishment towards disabled people, actually intends to perform a U-turn and empower us instead.”

Michelle Maher, of the WOWpetition – which calls on the government to assess the overall impact of its cuts to support and social care on disabled people – said she believed Duncan Smith’s speech signified a plan to cut the number of people receiving out-of-work disability benefits.

She said: “I firmly believe they thought the WCA would reduce numbers and that people were fraudulently claiming or making a ‘lifestyle’ choice.”

But when ministers realised this was not the case, she said, they decided to scrap the WCA and replace it with something “innocuous but deadly”, with more sanctions and even more “frightening and stressful” for ESA claimants.

Linda Burnip, co-founder of Disabled People Against Cuts, said: “What Iain Duncan Smith has said is interesting, but the mind boggles about what he is going to replace it with. He is a slimy snake and I wouldn’t trust him.”

Nick Dilworth, co-founder of the New Approach campaign group and welfare benefits specialist forthe website ilegal, said the speech had left many people “bewildered”.

He agreed that Duncan Smith appeared to have announced plans to scrap the WCA, but said he had provided no clue as to what he would replace it with.

He said: “I would warmly welcome reform if it was in the right direction.”

But he added: “I think it would be an absolute crying shame for that opportunity to be lost by Iain Duncan Smith spinning forth a load of rhetoric to get people onside and then doing the absolute reverse. That is what I think he will do.”

Dilworth said he believed that Duncan Smith would make it harder for disabled people to enter the support group of ESA – or the equivalent under universal credit – and said: “When he talks about reform, I am all for that, but I just don’t trust him.”

John McArdle, co-founder of Black Triangle, said: “IDS’s latest pronouncements are a signal that a fresh attack on the fundamental human rights of sick and/or disabled people is in the preparatory stages.

“You can’t help disabled people by impoverishing them through brutal austerity cuts as your guiding policy.

“IDS has realised that his disastrous social security cuts have failed to ‘make savings’, even on their own terms, so now he is fumbling around seeking new ways to justify further assaults on our welfare state.

“He’s a proven liar and is both dangerous and breathtakingly incompetent to boot.

“If the UK was still a civilised society – in a week when the DWP has been forced to reveal just how many thousands of sick and/or disabled people have died in abject penury after unjustly being found fit for work – IDS would have been summarily dismissed.

“Dying in poverty and neglect is now just a fact of life in what remains of our social security system, thanks to this man. It is intolerable.”

Disabled activist Caroline Richardson, from the Spartacus online campaigning network, said: “The evolution of universal credit has shown it to be now a system of sanctions, where a person has to continually increase their hours/wages under threat of not just losing the ‘amount a person needs to live on’ but also their housing and other benefits.

“Abolition of ESA reduces the ‘indicator flag’ that clearly differentiates people. I fear that assessments will increase in frequency, and be linked to the number of hours the assessor believes a person could work.

“Anyone with any capacity at all would be effectively on jobseeker’s allowance, even if their claimant commitment obligation for hours to be worked is very low.”
Choice and control have plunged under Tories, say government figures

The government is facing an embarrassing slump in one of the key measures of the success of its disability strategy: the proportion of disabled people who feel they have choice and control in their lives.

The results were included in the latest report from the Office for Disability Issues (ODI) on progress “towards the vision of disabled people living fulfilling lives”, through the Fulfilling Potential disability strategy.

They will be particularly embarrassing for the government, because “choice and control” is one of the strategy’s six major themes.

When the Office for National Statistics began collecting the figures, in 2008 – two years before the Conservative-led coalition came to power – it found that 76 per cent of disabled people said they frequently had choice and control over their lives.

But the new report, published on 21 August by ODI – but not publicised with a press release – showed that figure plunging to just 65 per cent last year, a fall of more than 14 per cent (or 11 percentage points) in just six years.

Three years ago, the government said it wanted its Fulfilling Potential strategy to “tackle barriers to realising aspirations and individual control” for disabled people”.

A progress report published last year said that the proportion of disabled people who believed they frequently had choice and control over their lives had been fairly stable from 2008 until 2012, but started to fall in 2013.

Disability News Service has now asked the Department for Work and Pensions for more detail on how the proportion of people enjoying choice and control changed between 2009 and 2012.

The figures are likely to add fuel to concerns that the Tory austerity programme – including cuts to out-of-work disability benefits, disability living allowance cuts and reforms, the introduction of the bedroom tax, cuts to social care, and the closure of the Independent Living Fund – has damaged disabled people’s chances to achieve independent living.

Other figures in the report will also raise concerns, with the proportion of disabled people who said their employer was very supportive falling from 57 per cent in 2013 to 53 per cent last year.

And the proportion of disabled people who said their work colleagues were very supportive also fell, from 65 per cent in 2013 to 59 per cent in 2014.

Just 40 per cent of disabled people said the protection provided by the Equality Act was effective (a slight rise on the 39 per cent of 2013).

There was also a sharp drop in the proportion of disabled people who said they had no difficulties with public transport, from 74 per cent in 2013, to 67 per cent in the latest report.
Long-awaited deaths stats ‘do not tell the whole story’

The long-delayed release of government figures on the deaths of benefit claimants has added fuel to years of concerns about the impact of aggressive welfare reform on sick and disabled people.

The Department for Work and Pensions (DWP) released two sets of data today (Thursday), one showing mortality statistics for out-of-work disability benefit claimants, and another showing death rates for all out-of-work benefit claimants.

Activists had been calling on DWP to publish updated statistics since November 2012, in an effort to prove that the work capability assessment (WCA), the eligibility test for employment and support allowance (ESA), was so damaging that it was causing deaths.

The information commissioner finally ordered DWP to release the figures after an appeal by Mike Sivier, a freelance journalist and carer who runs the Vox Political blog.

But many activists and commentators warned that the figures released by DWP today “do not tell the whole story”, and would require detailed analysis before any conclusions could be reached.

The figures reveal that, of the two million people who had gone through a work capability assessment and had received an ESA decision between 1 May 2010 and 28 Feb 2013, nearly 41,000 had died within a year of that decision.

The reports also show that, between December 2011 and February 2014, 81,140 people died while claiming ESA or incapacity benefit (IB).

And 2,650 ESA and IB claimants died soon after being found “fit for work” as a result of an assessment.

Another 7,200 died after being placed in the ESA work-related activity group (WRAG), for claimants the government had decided were well enough to move back towards work.

Other figures show age-standardised mortality rates (ASMRs), which allow for comparisons between the proportion of those dying while in different ESA groups and the general population.

These figures show that, in 2012, those placed in the work-related activity group (WRAG) of ESA were more than twice as likely to die (481.1 of every 100,000 people) as the general population (238.5 of every 100,000 people).

The following year, in 2013, the figures were 532.4 per 100,000 people for the WRAG and 240.4 for the general population.

DWP insisted that it was not possible to assume any “causal effect between benefits and mortality” from the “isolated figures” it had published, which “provide limited scope for analysis”.

It insisted that “nothing can be gained from this publication that would allow the reader to form any judgement as to the effects or impacts of the WCA”.

Despite this, work and pensions secretary Iain Duncan Smith had announced – just three days before the figures were published – that he wanted to scrap the WCA, and said there was a “fundamental flaw” at the heart of the ESA system.

Disabled People Against Cuts (DPAC) said the figures showed the WCA was “not fit for purpose”, although it would take time to analyse them properly.

DPAC’s statement said the figures “do not tell the whole story”, as they ignore those disabled people found fit for work but unable to claim jobseeker’s allowance because of its strict conditionality.

DPAC said the figures also ignore the thousands of disabled people sanctioned every month; those disabled people “portrayed as scroungers by the media”; and the “suffering and the humiliation of disabled people who have to prove their impairment/long-term health issues over and over again to DWP staff who don’t believe them”.

The disabled social affairs journalist Frances Ryan wrote in the Guardian that death had become part of Britain’s benefits system.

She said: “That is not hyperbole but the reality that the stress caused by austerity has led us to.

“Shredding the safety net – a mix of sanctions, defective ‘fit for work’ tests, and outright cuts to multiple services – has meant that benefit claimants are dying; through suicide, starvation and even being crushed by a refuse lorry when a 17-week benefit sanction forced a man to scavenge in a bin for food.”

Philip Connolly, policy and development manager of Disability Rights UK, said: “It is not just the charities but the British Medical Association and the Royal College of Nursing who have deplored this medical test for fitness for work.

“Now the evidence of the cruelty and stress involved in this test can be seen by everyone else too and not simply by the families of the dead. We need a completely new approach.

“This time it must be one that starts by supporting those who want to work to exercise their right to work – with encouragement and evidence-based support, not threats of poverty and inadequate programmes.

“And it must be one that disabled people, our representative organisations and health, social care and vocational rehabilitation professionals view as acceptable.

“It must be evidence-based. It must link assessment of needs to support. It must be fair.”

Frank Field, the Labour MP and the new chair of the Commons work and pensions select committee, said the figures were “distressing”, but added: “The key factor is whether the number of deaths are above what would normally be expected from claimants not deemed fit for work.”

He said he had written to Sir Andrew Dilnot, chair of the UK Statistics Authority, to ask if he would answer this and other questions, and “take this analysis further”.

The grassroots campaign group New Approach, which is dedicated to replacing the “toxic” WCA with a fairer system, said it was too early to conclude what the figures really showed, and added: “We will go through today’s figures in detail over the coming weeks and respond to them by issuing a further statement when our findings are complete.”

Among others warning not to read too much into the figures was Ben Goldacre, a doctor, academic, campaigner and writer, whose work focuses on uses and misuses of science and statistics.

He said: “Fit for work assessments may well harm people. These DWP figures do not give us the answer.

“Journalists and politicians claiming they can see any information one way or another in these figures are displaying their ignorance and wishful thinking.”

He said that the figures which could answer this question would be ASMRs for people on IB or severe disablement allowance who had been reassessed through a WCA and found fit for work.

Kate Green, Labour’s shadow minister for disabled people, said ministers had been trying to suppress the figures for more than three years.

She said: “The delay and the lack of transparency in publishing this information is a disgrace and has caused huge distress to the families and friends of those affected.

“These figures should be a wake-up call for the government. Ministers need to focus on sorting out the assessment process so that everyone can have confidence in it, and providing support for disabled people who can work in order to help them do so.”
NHS caps on continuing healthcare pose new threat to former ILF-users

Disabled people with complex health needs are at increasing risk of being forced into nursing homes by cash-strapped NHS commissioners unwilling to fund packages to support them to live independently in their own homes, campaigners fear.

At least two clinical commissioning groups (CCGs) – Mid Essex and Enfield – have already introduced rules that refuse to fund home-based packages of support for those eligible for NHS continuing healthcare if the cost is more than 10 per cent above the cost of a place in a nursing home.

Disability Rights UK (DR UK) has raised concerns that such moves to impose an artificial cap on home support packages could impact on former users of the Independent Living Fund (ILF), which closed at the end of June.

Faced with responsibility for an influx of service-users with high support needs, it is feared that local authorities will argue that many former ILF-users should instead be funded by the NHS.

If CCGs then cap the cost of support packages, it could force some ILF-users into nursing homes.

NHS continuing healthcare was introduced in 2007, and refers to packages of ongoing care for people with complex health needs that are arranged and funded solely by the NHS.

Earlier this month, the board of Mid Essex Clinical Commissioning Group approved new guidelinesthat allow new patients to receive NHS continuing healthcare at home only if that support costs a maximum of 10 per cent more than equivalent care in a nursing home.

A consultation on the plans saw only 22 per cent of 75 respondents backing one of two options to impose a cap.

Responding to the consultation, the user-led Spinal Injuries Association (SIA) warned that such a policy could breach both article eight – the right to a private and family life – of the European Convention on Human Rights (ECHR), and article 19 – on living independently – of the UN Convention on the Rights of Persons with Disabilities (UNCRPD).

SIA said the policy “strongly implies that the individual will be physically placed in a residential care home against their will”, which would be a “fundamental and material interference with their right to a private life”.

It pledged to support members who challenge the policy in the courts.

The SIA response added: “In summary, SIA wishes to make it clear that it rejects as unacceptable the proposals to restrict the cost of ‘care at home’ packages, and will support its members in opposing any attempts to coerce the CCG’s spinal cord injured patients into residential care.”

When asked if the policy would lead to fewer disabled people with high support needs living independently, a Mid Essex spokesman said: “This policy is intended to ensure that NHS continuing healthcare provision in mid Essex is an equitable process for all residents.”

He said Mid Essex had “sought legal advice prior to the consultation taking place to ensure we are meeting our legal obligations”.

Asked if the policy could impact on former ILF-users, he said: “The policy applies to all new patients.”

Enfield CCG has already introduced a similar policy for people assessed as eligible for NHS continuing healthcare, and will now “only consider the provision of ‘care at home’… where the total cost of providing care is within 10 per cent of the equivalent cost of a placement in an establishment”.

Enfield’s policy was introduced in October 2013 and is currently being reviewed.

A spokeswoman for Enfield CCG said that so far the policy had not been invoked, as colleagues had managed to “look at each individual’s needs and have worked the package around what is best for them”.

But she said the policy could still be invoked in the future, because Enfield CCG was a “financially-challenged organisation”.

She said Enfield does not “have any concerns” that its policy could breach the ECHR or the UNCRPD, and believes it is consistent with the government’s framework on NHS continuing healthcare.

But Sue Bott, deputy chief executive of DR UK, said she was “very concerned” that CCGs had begun to introduce such policies.

She said: “I think we will be looking to find out as soon as we can how many CCGs have got this policy.

“It is a direct threat to disabled people and there is a real worry that people could end up in a nursing home against all the principles of independent living.

“It is just not acceptable for people to be institutionalised, which is what it amounts to, in this way against their will.

“We will be campaigning and getting our allies to ask questions in parliament and we will be seeking some reassurance from ministers that disabled people are not going to face this threat.”

Bott said the new policies posed a threat to former ILF-users, as some local authorities were now referring them to CCGs for NHS continuing healthcare because of their own lack of resources.

Linda Burnip, a co-founder of Disabled People Against Cuts, said policies such as those in Enfield and Mid Essex were “very regressive” and were “taking disabled people’s rights to independent living backwards, basing it not on independent living but purely and simply on cost”.

But she said it was very difficult to know what impact these and other such policies would have on people’s care in the future, until the results of the chancellor’s spending review in the autumn.

News provided by John Pring at