It’s 2:30am and the house phone rings. I sleepily pick it up and hear a voice saying that my mother in law has been taken ill and that the paramedics are on their way to assess her. My wife decides to check things out throws on some clothes and heads off.
The NHS swings into operation. The patient is whisked off by ambulance to a local casualty department and arrives at around 3am. After a cursory examination to check that things are not life threatening my wife and her Mum settle down to await developments. Casualty has three other patients. A very confused old lady with lacerated legs wandering around in her nightie ranting and trying to remove the drips from her arm. A younger guy who is injured in some way and being given gas and air to control his pain and a ninety eight year old woman with an infection who is accompanied by her daughter.
A couple of hours pass and Mum meets a doctor. Questions are asked, blood is taken Paracetomol is given and the waiting continues. Another couple of hours pass with little communication except from the distressed old lady who is still wandering about. A tea and coffee machine is available but not working but finally the staff provide some hot drinks. Eventually the test results arrive and suggest that there is nothing specific to worry about so Mum, dressed in her nightie and dressing gown walks through the car park and my wife drives her home. It’s now 9am.
Does this story sound familiar? We all know that if you are taken dangerously ill the NHS will deliver first class emergency treatment. If however your situation turns out not to be an ‘emergency’ then patient care or plain old common decency seems to be in very short supply. When staff are rushed off their feet we know we have to wait. But if they appear to have the time why does everything take so long and why aren’t patients and relatives kept informed about what’s going on? A cup of tea at 5am is that too much to expect?
New network aims to unite disability movement
Many of the country’s leading disabled people’s organisations (DPOs) and disabled activists have agreed to set up a new campaigning network in a bid to unite the disability movement.
They hope their new network will bring together the traditional disability movement and the grassroots organisations of activists that have been fighting government cuts, often through the use of social media.
About 100 disabled activists attended the event in London today, including many of the leading figures in the disability and anti-cuts movements.
They agreed to the call to set up the network from Inclusion London’s chief executive, Tracey Lazard, as well as to develop a new manifesto to be used as a campaigning tool in the run-up to the next general election.
Lazard said she wanted to see a “unified movement” and for activists and DPOs to “come together and clarify the priority issues, and the priority threats and challenges to our rights and our movement”.
The Rethinking Disability Equality Policy and Practice in a Hostile Climate event heard from chief executives of DPOs, researchers, grassroots activists, and both left-wing and non-party political campaigners.
Jenny Morris, the disabled researcher and former government adviser, told the meeting that the coalition was responsible for “unprecedented attacks” on the achievements of the disability movement.
But she said: “Disabled people are mounting the strongest resistance amongst all the groups to government policies and we are gaining more and more public support. Our movement is actually more vibrant and is growing faster than at any time in its history.”
She warned that both Labour and coalition governments had used the language of the disability movement to “create policies that are actually creating significant disadvantages for us”.
She said social model campaigning by the disability movement had ignored those who were too ill to work, while the movement needed to push for the same “co-production” input into welfare reform that it had put into social care policy.
She warned also that the move towards direct payments and the personalisation of support had led to the “privatisation of social care”, with an under-funded system that was “too reliant on organisations motivated by profit and answerable to their share-holders”.
Debbie Jolly, a co-founder of the grassroots campaigning organisation Disabled People Against Cuts (DPAC), told the meeting that DPAC was receiving emails from disabled people who have been left with “no income whatsoever”.
Jolly described how the social model had been used to develop disabled people’s rights and support.
But she contrasted this with the “biopsychosocial model”, which had been developed by the insurance industry and used by the government and private sector – for example in devising the government’s “fitness for work” test – to “stop disabled people’s rights and support and to develop a denial of disability”, and to remove disabled people’s benefits.
She suggested the disability movement had “taken their eyes off the ball”, and called for more alliances with mainstream anti-cuts groups as well as “a new coalition or network of active disabled people and active user-led groups”.
Linda Burnip, another DPAC co-founder, suggested that many DPOs had become service-providers with local authority contracts, dependent on council funding and unwilling to campaign.
She said DPAC had “empowered disabled people to take control of their lives and feel able to protest”, had provided them with peer support, and had “raised awareness of disability within the wider anti-cuts movement”.
Eleanor Lisney, a leading disabled activist, questioned whether black and minority ethnic disabled people were being “left behind” and even abandoned as DPOs struggled with “dwindling resources”.
She said: “When you get double discrimination, who do you go to for help? Positive and real change can only be achieved with connection for everybody.”
Geraldine O’Halloran, a strategic development officer with Inclusion London, which hosted the event, said the Deaf community was “facing a crisis” because of the closure of services, with people facing “growing isolation”, and Deaf organisations becoming service-providers rather than campaigners.
Although the Deaf community was a “cultural and linguistic group”, she said: “We share a lot of experiences, a lot of oppression, a lot of discrimination, just the same as everyone else in this room.”
Andrew Lee, director of People First Self Advocacy, called for more disabled people to become councillors and MPs, and suggested launching a new political party of disabled activists.
He said: “I am fed up with consultation after consultation, and they go ahead and do what they wanted to do in the first place anyway. It is our experiences that make us the experts and not the politicians.”
Rob Murthwaite, a member of DPAC’s steering group, called for “more militancy” and more direct action.
He said: “We need to occupy more buildings, block more roads. We need to not just lobby politicians, we need to harass them.”
Lorraine Gradwell, chief executive of Breakthrough UK, said there were “lots and lots of pockets of very strong and good” campaigning activity, but she questioned whether there was currently a “disability movement”.
She backed the idea of a new network and said: “The time is right for us to pull them together into a strong whole.”
Andy Greene, another member of DPAC’s steering group, called for DPOs to do more to spread information about “the threat we are under, which comes from being undervalued in society.
The veteran disabled activist Micheline Mason said she believed the problems faced by disabled people were caused by capitalism, and she called for closer links with the trade union movement.
And another disabled activist, Merry Cross, called for a campaign to turn companies like Atos and Unum, heavily criticised for profiting from welfare reform, into “toxic brands”.
The event was supported by Norfolk Coalition of Disabled People, the Alliance for Inclusive Education and DPAC, with funding from the Joseph Rowntree Foundation.
Many of the activists and organisations that took part in the event will be protesting against cuts to disabled people’s benefits and services as part of the TUC’s anti-austerity A Future That Works march and rally in London on 20 October.
Disabled people will be at the front of the march, which will also act as the launchpad for a national week of action to “speak out against the cuts”, by the disabled people’s Hardest Hit campaign.
Meanwhile, Inclusion London has warned that there is less than two weeks left to respond to a consultation on the government’s decision to close the Independent Living Fund (ILF).
Protesters believe plans to close ILF – a government-funded trust which helps about 19,700 disabled people with the highest support needs – are a huge threat to their right to independent living.
The consultation closes on 10 October. For more information, read Inclusion London’s information paper on the consultation.
DWP silent on which organisations were tipped off about new ‘alliance’
The government has refused to say which organisations it approached in advance about setting up a new “alliance” of disabled people’s organisations (DPOs), charities, and private and public sector organisations.
Concern at the proposal to set up the new Disability Action Alliance (DAA) – which will be tasked with producing new disability policies for the coalition – mounted this week as influential parts of the disability movement gathered in London to discuss setting up their own separate campaigning network, in a bid to unify the disability movement.
The user-led disability charity RNIB is among those angry at the decision to appoint Disability Rights UK to lead the government’s new alliance.
Steve Winyard, RNIB’s head of policy and campaigns, said his organisation had “profound reservations” about DAA.
He said: “It is not at all clear why the government should think it is able to make decisions on behalf of disabled people about who represents them and who forms alliances.”
RNIB is the latest DPO to say that it was not told about the plans for the new alliance until the Office for Disability Issues (ODI) published its Fulfilling Potential – Next Steps document last week.
Winyard said RNIB would be writing to ODI to ask “for clarity about the process that led to DR UK being appointed”.
He added: “What rights do ODI and the Department for Work and Pensions have to be king-makers?”
So far, Inclusion London, the UK Disabled People’s Council (UKDPC), RNIB and Scope have all said that news of the new “alliance” had taken them by surprise when it was announced by the government last week, even though the Next Steps document states that “a number of organisations have already expressed an interest in joining the alliance”.
DR UK has this week clarified its involvement with the alliance.
Last week, it told Disability News Service that there “will be a fee for convening” DAA, but now it has stressed that although it will receive money to “facilitate other people’s involvement”, it was not “being paid” for its work.
A Department for Work and Pensions spokeswoman said the idea for the alliance had “emerged from the regular meetings that were held with a group of disability organisations during development of Fulfilling Potential – Next Steps”.
She said: “We spoke to a number of organisations about providing quotes for Fulfilling Potential – Next Steps, and in some of those discussions organisations expressed an interest in being part of a partnership or alliance.”
She said DR UK offered to work with ODI after saying in its response to last December’s discussion document that it wanted the government’s disability strategy to be “action focused”.
She said: “As the idea of the alliance firmed up it was clear that DR UK were well placed to convene the partnership as they are a UK-wide, pan-disability organisation led by disabled people, and with a presence in local communities… so they were invited to take on this role.”
UKDPC has already said it was “shocked and disappointed” by DR UK’s appointment, which it said had taken place “behind closed doors”.
It described the alliance as another “quango”, and said it would represent the views and interests of big business and service-providers.
UKDPC is among DPOs planning to approach MPs to ask questions in the Commons about how DR UK was appointed.
Liberal Democrat conference: Confusion over party’s position on disability benefits cuts
The Liberal Democrats have refused to rule out further government attacks on disability benefits, even though their president has suggested the party will not allow any more cuts.
Tim Farron was speaking to Disability News Service (DNS) after party members voted overwhelmingly to resist any further cuts to welfare spending that would fall “disproportionately” on disabled people.
Although he said the motion did not “bind” Liberal Democrat ministers, Farron went further than the measures voted for by rank-and-file party members.
Rather than arguing that cuts should not fall “disproportionately” on disabled people, Farron said he believed that there should be no further cuts to disability benefits at all.
Earlier in the conference in Brighton, Nick Clegg, the party’s leader and the deputy prime minister, had argued for more taxes on the wealthy.
Although he told the conference the coalition would start looking for cuts “at the top” and work down, he did not explicitly rule out further cuts to benefits.
But Farron said that he had a “very clear sense” from Clegg that his leader’s “instincts” were that these calls for those with more resources to pay more in taxes were “instead of” cuts to disability benefits and not “as well as”.
And he said he was “fairly sure” that “the intentions of the top of the party in government” were to be “significantly more supportive of people with disabilities” than the motion passed by party members.
He said: “It is incredibly important that the government not only protects those who are the most vulnerable in society but are seen to.”
The disabled Liberal Democrat MP Stephen Lloyd also suggested that there would be no further cuts to disability benefits, and told DNS that he believed the decision by the Conservative work and pensions secretary Iain Duncan Smith to resist attempts to move him from his post meant “he will fight tooth and nail to resists further cuts to welfare”.
Lloyd said that the Liberal Democrats “certainly will” fight any such cuts.
The party’s second-most influential government figure was less reassuring.
Danny Alexander, the chief secretary to the Treasury and a former shadow minister for disabled people, told the conference that spending on welfare – at one third of all public expenditure – was “still rising”.
He said: “We will have to look at it. But that cannot, must not, and will not, be the only place we look.”
And he added: “We insist that the difficult choices must be fairly shared: that those who can afford more must contribute more.”
A Liberal Democrat spokesman said the party’s position was that “if we have to look at cuts we should not dive for the welfare benefits” and that “before anything else we look at making sure the wealthy pay their fair share through wealth taxes”.
But he said he could not rule out further cuts to disability benefits “because the discussion has not been had in the party”.
Liberal Democrat conference: Osborne ‘partly to blame’ for care funding failure
The chancellor, George Osborne, and his civil servants in the Treasury are to blame for the government’s failure to deliver vital reform of the funding of long-term care and support, according to the former Liberal Democrat care services minister.
Paul Burstow, who lost his ministerial post in this month’s government reshuffle, said there had been “a fairly cold, hard-headed judgement on their part that this is not a priority”.
He first revealed his concerns about the Treasury last week, but focused on his frustration at the lack of “urgency” on the issue from senior civil servants.
Now, in an interview at the Liberal Democrat conference in Brighton, he has told Disability News Service (DNS) that he blames not only civil servants but also the Conservative chancellor, George Osborne.
He made it clear that the “institutional inertia” at the Treasury pre-dated the formation of the coalition in 2010 and had “bedevilled past attempts to reform funding”, while the previous Labour government had lacked the “very clear political will” necessary to overcome this resistance.
But when asked whether the current failure to approve funding reform should be blamed on Treasury civil servants or Osborne, he said: “I think it’s both.”
He added: “But you only get to the second of these two issues if you address the institutional orthodoxy within the Treasury which does not see this as a problem and therefore it doesn’t frame advice to ministers in a way that conveys a sense that there is a need to find a resolution.”
Burstow has pushed for Osborne and the Treasury to accept the findings of the Dilnot Commission on social care funding, which he said was the “missing piece” of the social care reform “jigsaw puzzle”.
As well as capping the costs of long-term care for older people, the Dilnot report includes proposals to introduce free care and support for all those with “eligible needs” who become disabled before the age of 40.
Burstow said he welcomed reports over the summer that the prime minister had “changed his mind on Dilnot” and now wanted to push through funding reform, but he said suggestions that the Treasury was now “actively engaged with the Department of Health to work out how we could pay for it” were not true.
He said: “There was no change of gear, no additional engagement from the Treasury, no sense that they were escalating it as a priority.
“The prime minister clearly has a very strong desire… as does Nick [Clegg], but they need to take on the Treasury to get it sorted.”
Burstow told DNS that the post of care services minister had been his “dream job”, and that he would continue to focus on social care reform from the backbenches.
Asked whether he was bitter that he had been sacked, despite his reputation as a competent minister whose care and support white paper in July had been widely welcomed – apart from the absence of funding reform measures – when widely-criticised Conservative ministers such as Osborne and Jeremy Hunt had not, he laughed.
He said: “Well, politics is a brutal game and you just have to accept the ups and the downs… There’s no place for bitterness because that just fills you up and it’s not my personality at all.”
His successor as care services minister, Norman Lamb, told a fringe event at the conference that Clegg, the party leader and deputy prime minister, had told him funding reform was a “top priority”.
Lamb mentioned the possibility of bringing in an “independent” figure to find a “quick conclusion” to the search for a way of paying for the reforms – within “months, not years” – as all three main parties were now “broadly in agreement” that Dilnot’s recommendations were the basis for a solution.
Burstow told DNS that he was proud to have established a “very firm foundation” for the reform of adult care and support through his white paper.
He pointed to its emphasis on personalisation and said it would have “a really profound effect on the rights of disabled people who need to access social care”, and would oblige local authorities to consider not just the immediate care needs of an individual, “but their right to have a full role in society”, including employment, leisure activities and education.
Liberal Democrat conference: Disabled MP says welfare reform heading ‘in right direction’
A disabled Liberal Democrat MP has insisted that the government is “moving in the right direction” with its programme of welfare reforms.
Stephen Lloyd, a member of the Commons work and pensions committee, said he believed measures to improve the much-criticised “fitness for work” test were making the assessments “less blunt”.
Disabled activists have repeatedly warned of fundamental problems with the work capability assessment (WCA), pointing to links between the test and health relapses, episodes of self-harm and even suicides and other premature deaths, among those being assessed.
These concerns have been highlighted by the death of Colin Traynor, who had epilepsy, and whose case was raised in the Commons earlier this month by his MP, Michael Meacher.
Traynor’s parents told Meacher that they blamed their son’s death in April on the stress of being found “fit for work”. His family only learned that his appeal against being found fit for work had been successful five weeks after he died.
This month, the mental health charity Rethink published a survey which found that more than eight in ten GPs said they had patients who had developed mental health problems because of the WCA. And in June, the British Medical Association voted to “demand” an end to the WCA.
But Lloyd said the changes made to the test were ensuring many more disabled people were placed in the “support group” of employment and support allowance, for those with the highest support needs.
And he suggested that government figures due to be published this autumn would show that the number of successful appeals against being found fit for work was falling.
He told Disability News Service (DNS) that this would show that changes recommended by the independent reviews of the WCA by Professor Malcolm Harrington – and implemented by the Department for Work and Pensions – were working.
But he accepted that government statistics published this month, which showed that one in five of the decisions to find people “fit for work” by the government WCA contractor Atos Healthcare were later found to be wrong, were “shocking”.
He said he had challenged Chris Grayling – until this month the Conservative employment minister – on whether there was anything in the Atos contract with the government that was encouraging Atos assessors to find people “fit for work”, but said he had “flatly denied it”.
He added: “I still fundamentally believe we are going in the right direction. Harrington has made the WCA fairer. I am not going to get rid of Atos. That is not ever going to happen. I want Atos to be constantly watched closer.”
Despite his support for the government’s direction on welfare reform, Lloyd spoke in favour of a conference motion this week that demanded that any further cuts to welfare spending would not fall “disproportionately” on disabled people, and which called for an independent review of the Welfare Reform Act’s impact upon them.
Party members also demanded – with only one person voting against – a public consultation on the current assessment procedures for determining eligibility for disability benefits, including the WCA.
Lloyd told DNS that Iain Duncan Smith’s refusal to be moved from his post as work and pensions secretary was “very significant”, because if he had not stayed it “would have been that much easier for the Treasury to swing the axe” on welfare spending.
He said: “IDS staying means I think that he will fight tooth and nail to resist further cuts to welfare. The Liberal Democrats certainly will.”
He later told a fringe meeting organised by the Employment Related Services Association that he admired Duncan Smith, who he said had formerly belonged to the “demented, right-wing, Daily Mail wing” of the Conservative party but had had a “genuine epiphany” and was now “passionate about breaking benefit dependency”.
Liberal Democrat conference: Minister admits ‘risks’ with assisted suicide law
The new Liberal Democrat care services minister has admitted he is not convinced that the necessary safeguards can be found that would allow assisted suicide to be legalised, despite backing calls for new laws.
Norman Lamb alarmed many anti-euthanasia campaigners when he told a journalist shortly after his appointment earlier this month that he was in favour of legalising assisted suicide.
But Lamb has now told Disability News Service (DNS) that he accepts there is a possibility that such a law would not be able to frame safeguards that would provide the necessary protection to sick, disabled, and older people.
His comments came at his party’s annual conference in Brighton, only an hour after his party voted heavily in favour of calling on Liberal Democrat ministers to “press for a government bill” to legalise assisted suicide.
When DNS asked Lamb whether the necessary safeguards could ever be devised, he stressed that any law would need to enforce a “period of reflection” once a person had asked for an assisted suicide, but added: “Ultimately I cannot accept the argument that because there are risks, that person has no rights.”
DNS suggested a scenario in which assisted suicide had been legalised, and a woman with a progressive, life-limiting condition – and a debt-ridden daughter who cared for her – who enjoyed her life but knew that if she died, her only child’s financial problems would be solved, was seeking an assisted suicide.
DNS asked how the government could introduce sufficient safeguards to prevent a disabled person in such a situation from being given permission to be helped to die.
Lamb, who said he had previously been opposed to legalising assisted suicide, said: “I believe that person does have rights. I would simply want to contemplate further how you would protect against this risk, which I accept is a risk.”
He made it clear that he had “reached no conclusion” on whether such safeguards could be found, and said: “That person has rights. I would want to reflect on how you achieve those safeguards.”
Robert Adamson, chair of the Liberal Democrat Disability Association – but speaking in a personal capacity – who voted against the assisted suicide motion, said he was concerned that legalisation would “crack open the door that abusers could go through”.
He said it would open up the possibility of “abuse of the system”, while some people could be pressured by their families to take the assisted suicide option.
Adamson said many “well-meaning people who live in comfortable relationships” did not understand that there were “a few, a very few, quite nasty people out there in society” who could abuse such a law.
He also said that – if assisted suicide had been legal 15 years ago – he “might have made the decision to go for it” because he was deeply depressed at the time at the progress of his impairment – he has multiple sclerosis (ms) – and had just lost his first wife, who also had ms.
Today, his perspective has changed dramatically. “Now, 15 years on, I have a really fulfilling life. I have discovered this marvellous political hobby and I have got married again.”
But Shana Pezaro, another disabled Liberal Democrat, who also has ms, insisted that the choice of an assisted suicide must be available.
She told DNS: “I would only want this to happen if there was a very, very tight judicial process that you would have to go through.
“They need to be absolutely convinced that the person genuinely wants to end their life, that life has become something that is unliveable, and that they have made that personal choice to end it.”
She added: “I wouldn’t want this to be an easy choice. However, I would want that choice to be there.
“For me personally I would take the risk having it legalised, knowing I could be that person who falls through the net.
“I would still rather have the right to die. That is more important to me than worrying I might fall through a net.”