Ministers hid secret death reports from their ‘fitness for work’ test reviewer
Government ministers failed to show secret reports into the deaths of benefit claimants to the independent expert they commissioned to review their much-criticised “fitness for work” assessment, new evidence suggests.
A Department for Work and Pensions (DWP) response to a Disability News Service (DNS) freedom of information request shows that seven of its secret “peer reviews” should have been shown to Professor Malcolm Harrington as he was preparing his final report into the work capability assessment (WCA).
Peer reviews have to be carried out whenever “suicide is associated with DWP activity”, as well as in some other cases involving deaths of disabled or “vulnerable” claimants.
DWP only started collating the peer reviews centrally from February 2012 and Professor Harrington published his final report on the WCA in late November of the same year.
DWP admits in its freedom of information response that “there were seven peer reviews, from February 2012 until Professor Harrington’s report of that year, in which the terms ‘WCA’ or ‘Work Capability Assessment’ were mentioned”.
The DWP response adds: “The Department does not hold any information to confirm or deny whether these Peer Reviews were shared with Professor Harrington.”
Redacted versions of 49 peer reviews were finally released in May this year – dating from 2012 to 2014 – following another DNS freedom of information request and a ruling from the information rights tribunal.
But these peer reviews were not dated, and so it is impossible to work out which of them are the seven from 2012.
When shown the latest DWP freedom of information response, Professor Harrington, who carried out the first three reviews of the WCA – in 2010, 2011 and 2012 – told DNS that he was convinced that he would remember being shown “such damning indictments of the system”.
He said: “I have NO recollection of seeing any of the reviews you mention.
“Maybe my brain is failing, but such damning indictments of the system – if seen – should have triggered a response from me. It didn’t.”
Professor Harrington has already told DNS – last year – that he believes he was not shown a letter by DWP that was written by a coroner to ministers following the suicide of Stephen Carré in January 2010.
When they were appointed in May 2010, Iain Duncan Smith and Chris Grayling assumed responsibility for responding to the letter, written by coroner Tom Osborne, who carried out the inquest into Carré’s death and raised serious concerns about the safety of the WCA.
Osborne had asked the Labour work and pensions secretary Yvette Cooper – who never saw the letter, as the general election was called just days after it arrived – to review the policy not to seek medical evidence from a GP or psychiatrist if someone applying for out-of-work disability benefits had a mental health condition.
But Duncan Smith, Cooper’s successor, and Grayling, his employment minister, appear to have dismissed the letter, and failed to show it to Professor Harrington, while deciding to roll out the test to hundreds of thousands of long-term claimants of incapacity benefit, many of whom had mental health conditions.
Professor Harrington told DNS last year: “I cannot recall the report. Nobody brought it to my attention that I can remember.
“If I had known about that coroner’s report, I would have said that this was something else we need to look at.
“I am a doctor, I know about coroner’s reports. Coroner’s reports are something that you don’t ignore.”
Taken together, the evidence suggests strongly that DWP deliberately withheld vital evidence from Professor Harrington about serious flaws with the WCA that were causing the deaths of people with mental health conditions.
This information would almost certainly have persuaded him to take action that would have made it harder for DWP to fulfil its aim of finding more people with mental health conditions “fit for work” and allowing it to cut its spending on out-of-work disability benefits.
The new evidence is likely to strengthen calls for Duncan Smith and Grayling to face a criminal investigation for misconduct in public office.
It came just as Scottish criminal justice agencies were rejecting a request to investigate the failure of the two ministers to improve the safety of the WCA, despite evidence that their neglect caused the deaths of at least three Scottish benefit claimants with mental health conditions*.
Linda Burnip, co-founder of Disabled People Against Cuts, said: “Sadly, little shocks me nowadays about the callous and inhuman behaviour of the previous Condem and current Tory government, but a failure to pass on vital information to the expert they employed to review their failing policy is more than just total incompetence and is nothing short of criminal.”
A DWP spokeswoman said the current work and pensions secretary, Damian Green, did not believe there should be an independent inquiry into the apparent failure of Duncan Smith and Grayling, and senior civil servants, to pass on vital information to Professor Harrington about the safety of the WCA.
She said he also did not believe that a criminal investigation was now necessary into the actions of Duncan Smith and Grayling.
Asked why DWP did not have a record of which documents were shared with Professor Harrington, she said: “As the FoI stated, the department does not hold information on this matter.
“We are constantly reviewing our processes and procedures and have made significant improvements to the work capability assessment, such as introducing mental health champions, and ensuring that claimants who are likely to be found fit for work receive a telephone call to explain the decision and check whether all the evidence has been considered.
“It is important we make sure that people are receiving the right support, and they are not simply written off to a life on benefits.
“The work capability assessment has been improved dramatically since 2008 following a number of reviews, including five independent ones.”
*See separate story
22 December 2016
McDonnell hides from questions over promise to write ILF letter to Labour councils
Labour is facing new concerns about its commitment to disability equality, after questions were raised over whether the shadow chancellor ever wrote a letter he promised to send to councils about the closure of the Independent Living Fund (ILF).
John McDonnell pledged at a parliamentary meeting in early September to write to every Labour-run local authority in England, asking them to ring-fence government money they receive to compensate for the ILF closure.
But McDonnell’s office has refused to answer questions about the letter, and none of the Labour-run councils contacted by Disability News Service (DNS) so far has been able to find any record of receiving such a letter.
The government money is handed to councils every year to contribute towards the support needs of former ILF-recipients, following the fund’s closure in June 2015, but the money was not ring-fenced by ministers and so many local authorities have used it for other purposes.
McDonnell promised disabled campaigners at a packed parliamentary meeting in September that he would write to Labour-run councils, asking them to ring-fence the funding for former ILF-recipients.
He said: “We will do that. We will talk to individual councils about how they can protect the funding here.”
The meeting had been held to launch Inclusion London’s report, One Year On: Evaluating The Impact Of The Closure Of The Independent Living Fund.
The report included analysis of freedom of information responses received by Inclusion London from each of the capital’s 33 local authorities, which showed vast differences in the proportions of former ILF-recipients whose packages had been cut after the fund’s closure.
DNS has been trying for nearly four weeks to secure answers from McDonnell’s press spokesman about how councils responded to the letter, but other than acknowledging one email, he has refused to comment.
A spokeswoman for Labour-run Gateshead council said this week that no-one she had contacted about McDonnell’s letter “knows anything about it”, including the council leader and the cabinet member for social care, as well as “various people” in the social care department “who would have remembered if a letter from the shadow chancellor came in”.
A Derbyshire council spokesman said they were “checking all the channels that this letter may have been received by the county council but are not in a position to confirm we’ve received it at the moment”.
And a Lambeth council spokesman said he could not “find any evidence of it having arrived”.
Jonathan Bartley, co-leader of the Green party, who secured the promise from McDonnell in September, has written twice to the shadow chancellor’s office, asking to see the letter.
He said the urgency of the issue had been made “very clear” by disabled people who spoke at the Inclusion London meeting.
He said: “The independent living report left none of us in any doubt of the immense hardship being caused by local authorities of all political persuasions who are not ring-fencing the ILF money.”
He said there had been “huge support” at the meeting for his suggestion that McDonnell write to Labour-run councils.
He said: “If this hasn’t happened it is extremely disappointing at a time when many disabled people face real hardship and there is something that could be urgently done by Labour councils to help them.”
But it is just the latest in a string of actions by the Labour party that have left many disabled activists frustrated and angry.
Last week, DNS reported how the disabled crossbench peer Baroness [Jane} Campbell had attacked Labour’s “lazy indifference” to disability equality, after it abstained on a vote in the House of Lords that would have forced bars, shops and restaurants to ensure their premises obeyed laws on accessibility when renewing their alcohol licences.
Labour has also failed to appoint a shadow minister for disabled people since Debbie Abrahams was promoted to shadow secretary of state for work and pensions in June.
And last month, Abrahams’ office invited a disabled people’s organisation to speak at the launch of her disability equality roadshow, and then withdrew the invitation after discovering that it wanted to talk about independent living.
Bartley said he could not see a justification for Labour abstaining on the Lords vote.
He said: “It is one disappointment after another at the moment [with Labour].
“I want to be as constructive as possible. We really want to work with Labour and SNP [on disability rights issues].”
But he said Labour had missed “a really great opportunity to do something positive” with the licensing amendment.
He said: “In my local community, a third of the shops, bars and restaurants you can’t access as a wheelchair-user [his son uses a wheelchair].
“It’s not right that the onus is on the disabled person to make that complaint. It puts them in a very awkward position in their community.
“It puts another burden on them… when this is an issue of basic, fundamental rights.”
22 December 2016
Criminal justice agencies reject call to investigate Duncan Smith’s WCA failings
Scottish criminal justice agencies have rejected pleas to investigate the failure of two ministers to improve the safety of the government’s “fitness for work” test, despite evidence that their actions caused the deaths of at least three benefit claimants.
Police Scotland was asked in March to investigate allegations of “wilful neglect of duty” by former Department for Work and Pensions (DWP) ministers Iain Duncan Smith and Chris Grayling.
A dossier containing details of the deaths of three benefit claimants with experience of mental distress was passed to Police Scotland by the Scottish grassroots campaign network Black Triangle.
The three claimants – Paul Donnachie, David Barr, and a woman known only as Ms D E – took their own lives in 2015, 2013 and 2011 as a result of grave flaws in the work capability assessment (WCA).
These flaws mirrored those uncovered by a coroner in January 2010, following the suicide of Stephen Carré, and passed to DWP in a prevention of future deaths report just a few weeks before Duncan Smith and Grayling took up their new posts following the May 2010 general election.
Black Triangle approached Police Scotland with the dossier in March 2016 because it believed there was clear evidence that the two ministers neglected their duty as public servants in refusing to bring in the changes called for by the coroner, so causing other deaths, including those of Paul Donnachie, David Barr and Ms D E.
Black Triangle said its dossier concluded that, “were it not for the alleged criminal omissions by the two ministers, these and countless other deaths could have been and could yet be avoided”.
But nine months after Black Triangle passed the dossier to Police Scotland, the force appears to have done little to investigate the allegations, other than consulting with the Crown Office and Procurator Fiscal (COPF), the Scottish equivalent of the Crown Prosecution Service.
This week, Edinburgh police confirmed that it would be taking no further action on the David Barr case, while COPF said that it had also decided that no further action should be taken on the Paul Donnachie case.
Police Scotland said that COPF had already decided that there was no link between DWP’s decision to find David Barr fit for work – following a 35-minute assessment by a physiotherapist – and his decision to take his own life a month after being told by DWP he was not eligible for employment and support allowance (ESA).
Maureen Barr, David’s mother, said this week that she was “disappointed” at the COPF decision, but “definitely” still wanted Duncan Smith and Grayling to face justice.
John McCardle, co-founder of Black Triangle, said: “We have been given no detailed information on what legal reasoning has been applied to any of the above matters and there seems to be complete silence on the compelling evidence set out in the case of Ms D E.
“In all the circumstances, this conduct is totally unacceptable and constitutes an insult not only to the families of the deceased but to every disabled and vulnerable Scot and their families who look to Police Scotland and the COPFS to keep them safe.
“This is not over. We are consulting with our legal advisers and will be taking this all the way.
“For disabled people in Scotland and equally throughout the UK these are literally matters of life and death and Black Triangle campaign will not let them down, whether or not the state chooses to.
“We would like to appeal to all of them to continue to support our campaign for justice and to never give in to despair in spite of any and all setbacks.”
A COPF spokesman said: “The circumstances surrounding the deaths of Mr Donnachie and Mr Barr have been fully investigated.
“The Procurator Fiscal and Crown Counsel have respectively concluded that no further investigation is required and that no further action should be taken.
“The nearest relatives have been informed of this decision and have been offered an opportunity to discuss it further with the Procurator Fiscal.”
Police Scotland has previously said it would only look at the Ms D E case if Black Triangle or Disability News Service were able to pass on her personal details.
But those details have never been made public, as her death was the subject of a report by the Mental Welfare Commission for Scotland (MWCS), which treated her case anonymously and concluded that she killed herself after being told she was not eligible for ESA.
The report linked her death to DWP’s failure to obtain medical evidence about her mental health from the professionals who had treated her, just as the coroner had done in the case of Stephen Carré.
This week, MWCS declined to comment when asked if Police Scotland had requested Ms D E’s details, stating that it was “for Police Scotland to respond to your request related to any investigation”.
Police Scotland and COPF had both refused by 11am today (Thursday) to say whether they had attempted to contact MWCS since receiving the Black Triangle dossier in March.
McArdle said the Police Scotland and COPFS responses “beggar belief” and that communication from Police Scotland earlier this year “clearly shows that the ball was in Police Scotland’s court to contact the chief executive of MWCS”.
He said: “In an open and democratic society operating under the constitutional principle of the ‘rule of law’, we are entitled to require the full facts and complete transparency from our police service and we will not desist until the full facts are revealed.”
22 December 2016
‘Meagre’ extra social care funding ‘will do nothing to solve crisis’
“Meagre” new funding announced by the government will do nothing to solve the “full-blown social care crisis”, disabled campaigners have warned.
They spoke out after the government announced that it would ring-fence an extra £240 million for councils to spend on adult social care next year, as well as allowing local authorities to bring forward council tax increases that were already set to raise further ring-fenced social care funding.
But user-led groups, disabled activists, disability charities and cross-party politicians say the extra funding will be inadequate for dealing with the crisis.
The announcement last week by communities and local government secretary Sajid Javid will mean councils can raise council tax by up to three per cent in both 2017-18 (an extra £208 million) and 2018-19 (an extra £444 million), instead of two per cent in each of the next three years.
He also announced that £240 million from changes to what his department calls the New Homes Bonus – rewarding councils for new homes built in their areas – will be ring-fenced as a new adult social care grant.
Campaigners and social care experts pointed out that the rise in council tax will raise far more in wealthy areas than less prosperous local authorities.
And a Department for Communities and Local Government spokesman confirmed that the £240 million was a one-off grant, and would not be repeated next year.
Professor Peter Beresford, co-chair of the national service-user network Shaping Our Lives, said: “Social care seems to have become the policy that anti-spending governments have decided can safely be ignored and left in crisis. So it goes on.
“Another year where all the weak-willed efforts of social care’s self-appointed leaders and big charities to encourage policymakers to make some real investment have again failed.
“Also where all the desperate efforts of grassroots disabled people’s users’ and carers’ organisations have been ignored.
“But you heard it here first. Social care may well be the policy – because of the scale and impact of its failure – that irrevocably damages this government and brings to an end the evils of austerity and anti-welfare policies. It is hurting too many.”
Linda Burnip, co-founder of Disabled People Against Cuts, said the government’s “inadequate response” to the “full blown crisis in social care” had been criticised by both opposition and Tory politicians.
She said the rise in council tax “leaves areas with the highest levels of need unable to raise sufficient money”.
She pointed to evidence from Ray James, the immediate past president of the Association of Directors of Adult Social Services, who has told MPs that the most affluent areas raise about two-thirds of their council spending through council tax, compared to the most deprived areas that raise less than 20 per cent, so increasing council tax “raises least money in areas of greatest need”.
Burnip said that the government’s pledge to redistribute funding from its Better Care Fund (BCF) to areas unable to raise enough money through increases in council tax had also been criticised, because this would “reduce the amount available for transformation and integration of care, the purpose for which the BCF was originally established”.
She said: “Further, but of vital importance, particularly to the disabled people’s movement, these proposals are aimed at providing basic social care only and do not in any way address issues of the right to live independently in the community.
“A loss of this [UN Convention on the Rights of Persons with Disabilities] article 19 right is one of the major areas of criticism aimed at the government by the recent damning UN report.
“Independent living is a right and aspiration that disabled people in the UK must never lose sight of as a basic and fundamental human right.”
Sue Bott, deputy chief executive of Disability Rights UK, said she agreed that the extra money was not enough, that raising extra funding through council tax increases was unfair, and that the government did not appear to have a plan for solving the social care funding crisis.
She added: “My fear is that the meagre additional funds that do become available will go straight to social care service-providers who are becoming a well-organised lobbying force, rather than to disabled people who want to have choice and control by employing our own personal assistants.”
Meanwhile, Labour leader Jeremy Corbyn has written to the prime minister to ask for “urgent talks at the highest level” on averting the “deepening crisis in social care”.
John McDonnell, Labour’s shadow chancellor, has written to chancellor Philip Hammond, calling on him to authorise further spending, and describing the rise in council tax as “inadequate, and fundamentally unfair”.
Norman Lamb, the Liberal Democrat shadow health secretary and a former social care minister, described the extra money as “a truly feeble response to a national crisis”.
And Dr Sarah Wollaston, the Conservative MP who chairs the Commons health select committee, called for urgent cross-party talks to secure “a long-term, fair, sustainable settlement for both health and social care”.
The prime minister, Theresa May, told MPs on the Commons liaison committee this week that the government was starting to work on a long-term plan for addressing the funding of adult social care, but gave no hint as to what that plan might be.
Clive Betts, the Labour chair of the communities and local government committee, told May that the number of people receiving social care had fallen from 1.7 million to 1.1 million over the last six years, while there were now about one million people who should be entitled to social care but were not receiving it.
Real terms spending on social care fell by nine per cent over the last parliament, he said.
But May said: “It is wrong to assume that the only solution in social care is a solution about funding.”
She said there were different standards of delivery of social care across the country, with some “very good examples” of integration between NHS and social care, and areas where there were “virtually no” delayed discharges from hospital caused by a lack of social care in the community.
Betts said that Simon Stevens, chief executive of NHS England, had told his committee last week that even if all councils were brought up to the standard of the best-performers and there was full integration of NHS and social care, it would still not solve the social care funding pressures.
Betts said: “The idea somehow that this problem is going to go away if we slightly improve performances in some local authorities and we integrate health and social care better, simply isn’t true, is it?”
May said the government accepted there were “short-term pressures” and a more medium-term problem with “delivery”, as well as a longer-term issue of ensuring a “sustainable system of social care going into the future”.
She said: “The government is already starting internally to look at this issue in relation to long-term social care.
“We want to make sure that we have got a solution that is going to be sustainable, but this isn’t going to be an immediate ‘let’s have a quick review over a matter of weeks, and that’s it’.”
She resisted requests to ensure that this review of future funding was carried out on a cross-party basis.
22 December 2016
Activists mourn Robert Dellar, co-founder of Mad Pride and a ‘tenacious force for good’
Mental health activists are mourning the loss of Robert Dellar, a “tenacious force for good in an uncaring world” and one of the founders of Mad Pride, who died at the weekend.
Dellar avoided the media limelight, but had been a driving force behind the user-led campaign, which was set up to celebrate mental health culture.
Dellar, who leaves a partner, Shirley, was also an active member in recent years of the user-led campaigning organisation that grew out of Mad Pride, the Mental Health Resistance Network.
Through Mad Pride, he helped organise countless gigs, compilation CDs and direct action protests, and was a key figure in protests against the last Labour government’s plans to introduce community treatment orders (CTOs).
But he also worked tirelessly to support mental health service-users in a professional capacity for many years, and his last paid work was as an advocate for prisoners with experience of mental distress, in Brixton Prison.
One of his earliest successes was his pioneering work in setting up a patients’ council and advocacy department at Hackney Hospital, a mental health institution in east London.
In 1997, Dellar was appointed as a development worker at Southwark Mind, which had just been transformed into a user-led charity thanks to the efforts of survivor activists Pete Shaughnessy and Denise McKenna.
Dellar set up another “user council” in Southwark, which, said McKenna, was a radical move because it “shifted the power imbalance usually found in service user involvement within services”.
She said: “There were already survivor groups around, setting agendas from a survivor perspective, but Robert formalised this shift in power within statutory services by enabling an interface between providers and users to take place on users’ terms.
“Service providers, from the CEO of the local NHS trust, clinicians, senior police officers, through to local council officers, were eager to attend user council meetings and be answerable to service users.”
Two years after moving to Southwark Mind, Dellar helped Shaughnessy organise a march on Marjorie Wallace’s mental health charity SANE, in protest at its support for CTOs.
Dellar would write later, after Shaughnessy’s death in 2002: “We managed to get 200 people turning up to the SANE march – which at the time was an unprecedented figure for a ‘mad’ demo.
“We had whistles, drums, a 7-foot long syringe together with a kitchen table, corn-flakes and milk, tridents (because we’re the devil), banners, flyers you name it – we pulled out the stops.
“SANE didn’t know what the fuck had hit them. They dropped their support for CTOs and to this day, they’re still reeling from this event.”
Fellow mental health activist Mark Roberts had earlier introduced Shaughnessy to his friend Simon Barnett and persuaded them both to be involved in the user group Survivors Speak Out, which had been a pioneering network of mental health survivors since it was set up in 1986, but was gradually losing its influence.
While organising the SANE demo, Shaughnessy introduced Roberts and Barnett to Dellar, and together they set up Mad Pride.
They were determined to avoid the arguments and endless debates that had begun to affect Survivors Speak Out, said Roberts.
It was Dellar’s connections in the London punk scene – and his promotional and organisational skills – that helped Mad Pride to grow through its cultural events, said Barnett, and he continued organising and promoting Mad Pride events until shortly before his death, despite his ill-health.
Mad Pride probably reached its creative peak in 2000, with a festival in Clissold Park, Stoke Newington.
Dellar would later suggest that they had probably “over-reached” themselves that summer, with several other concerts and the publication of an anthology he co-edited, Mad Pride: A Celebration Of Mad Culture, which was described as “a revolutionary series of 18 autobiographical stories about people’s experiences of mental distress”.
“The Mad Pride work was too intense,” he wrote, “and none of us have ever been quite the same again.
“But we tried, we got user-led mental health issues into the media as never before, and we inspired many people.
“We also, without a doubt, moved the paradigm of the British ‘user movement’ left-wards.”
Years later, it was the anti-austerity protest Dellar organised in Hyde Park in the autumn of 2010 – following months of preparation – that led McKenna and fellow survivor-activists to set up the Mental Health Resistance Network (MHRN).
The protest saw more than 80 activists took part in a demonstration near Speaker’s Corner, in which they burned a two-faced effigy of David Cameron and George Osborne to demonstrate their anger at cuts to disability benefits.
McKenna said the protest had “focused the minds of some of us to set up a more sustained campaign against the dismantling of the welfare state”.
In the last couple of years, he had become closely involved with MHRN, attending protests about the co-location of mental health and DWP services, and protesting at what activists saw as the “collaboration” of the national charity Mind with the Department for Work and Pensions.
McKenna said Dellar had been “horrified” by the thought that national Mind might be bidding for DWP contracts, which “would mean local Minds would be pushing the now ubiquitous work cure”, and he had been involved in calls for local Minds to disaffiliate from the national charity.
Friends also spoke this week of Dellar’s writing talent, which included the “very, very entertaining” punk fanzine-style newsletters he edited for many years for Southwark Mind and its user-led successor, Southwark Association for Mental Health.
McKenna said Dellar played “a huge role in developing the idea of mad culture through his writing and the many cultural events held by Mad Pride.
“Robert saw Mad Pride as primarily about resisting both mental health stigma and the power of psychiatry.
“Although he was critical of psychiatry, he believed that society had to respond in some way to mental distress, it was not a private matter and needed to be addressed at a societal level.
“He respected people’s use of psychiatry if it was helpful to them but was always aware of the controlling nature of it.
“When it came to finding ways to cope with mental distress, Robert was a pragmatist.”
She said he also dealt with the “everyday tasks of helping people with benefit claims and all of the practical things that are so important for the individual to survive.
“He was highly empathic and could identify with anyone, especially those on the margins of society.
“He was kind and gentle while at the same time managing to be a powerful force.”
She added: “Robert was radical, anti-establishment, irreverent, non-conformist and funny yet he encapsulated everything that is civilised in what is fast becoming an uncivilised world.
“He had a brilliant intellect, was steadfast and extremely hardworking. He was also disarmingly humble.
“Above all, Robert was loved by so many people. He is a huge loss to MHRN and to the wider survivor community.”
Simon Barnett described his friend as “really hard-working” and “full of humility”, and also “very loyal, funny, caring and gentle”.
He said: “He was a gentleman in the true sense of the word. He didn’t put himself in the limelight.
“He didn’t want to be in the limelight. He was the driving force behind.”
Mark Roberts, another of the Mad Pride co-founders, said his friend was “an absolutely key figure in the mental health activist world” and “amazingly hard-working” with a “great sense of adventure” and a “wicked” sense of humour.
He was not as well-known as other activists because he let others speak, and was more of a “back-room person”, said Roberts.
Like others, he spoke this week of Dellar’s kindness, but said he was also “very tough, very pushy with the system”, but on behalf of other people rather than himself.
He remembered how Dellar offered him “sanctuary” so he could go into hiding when he was being threatened with being sectioned and “having psychiatrists and police knock down my door and drag me out”.
Roberts said Dellar also brought a sense of fun to what was often a gruelling area of work. He himself has lost about 30 friends from the movement over the years.
“Robert always wanted people to have fun,” he said. “Mad Pride was a celebration of who we were, but it wasn’t just banners and protests… it had to be fun.”
Gini Simpson, a “friend, collaborator and fan” of Dellar, said he was “a true friend and one of the kindest, cleverest people I have ever met”, as well as being “an authentic punk, who opposed the chronic abuse of power he saw around him”.
She said: “This is the man who put punk rock gigs on in the acute ward at the then Hackney Hospital, who organised football matches at Broadmoor and who arranged for a stupendous line up of bands to play at the Mad Pride festival in Clissold Park, when the local council were expecting limp cheese sandwiches and ‘carers’.
“Robert was a tenacious force for good in an uncaring world. This gentle man will be sorely missed, but definitely not forgotten.”
Another friend, Michelle Baharier, said: “He was one of the kindest, most compassionate people you could meet.
“He would support and facilitate others wherever he could. The user-led community have lost an amazing campaigner and light for hope.”
One long-time friend posted on Facebook: “In an ever changing world he remained steadfast, loyal to calling out injustice wherever he found it, a campaigner, a wit, a brilliant organiser, writer, poet, polemicist, provocateur, a comrade, an intelligently sensitive soul with a sense of fun.”
Among his many other activities, Dellar – together with Barnett – put together five CD compilations of bands that had played gigs for Mad Pride.
Dellar was a “raw and funny” writer, said Barnett. As well as “loads of short stories and articles”, he wrote the autobiographical Splitting In Two: Mad Pride And Punk Rock Oblivion.
He also edited an anthology of punk-themed short stories, Gobbing, Pogoing And Gratuitous Bad Language!.
Ted Curtis, who had been a friend for more than 25 years, remembers reading his “funny and acerbic” fanzine Straight Up when Dellar was a student at the University of Sussex in the 1980s, although he didn’t meet him until they ended up squatting in the same house in Hackney in the early 1990s.
Dellar was supportive of his writing, and Curtis was one of his six co-authors for the 1998 novel Seaton Point, in which the plot took place in a high-rise block of flats on a Hackney estate.
Curtis said: “He was really supportive of everything I did from then on.
“When I got seriously depressed he helped me out with that. I wouldn’t be here without him, and I can’t believe he’s gone.
“He was all love, all the way, all day. He was warm, funny, loving, giving. He would do anything for anyone.”
Another who paid tribute to Dellar’s kindness and generosity this week was Pete Shaughnessy’s widow, Penny.
She said: “Robert Dellar saved my life, of that I have no doubt.
“His kindness helped me survive the trauma of my husband’s suicide 14 years ago, and that kindness has gone a long way, and will continue to do so.
“I hadn’t really had the opportunity to get to know Robert personally when Pete was alive, but knew how important he was to Pete, and I enjoyed listening to them scheming and laughing together on the phone (for hours and hours and hours).
“Because Pete killed himself on the same day I was made homeless, and because I had no other support, Robert took me in and gave me a safe space to recover, he allowed me to stay in his upstairs room with access to a roof space, so that I could sit in the sun, he introduced me to friends that I am still in touch with, he introduced me to the best music I’ve ever heard, he provided me with everything that is important, and expected nothing in return.
“And although the circumstances were tragic, I look back fondly and feel incredibly lucky to have spent that time with him.
“There is nothing I can say about Robert that won’t already have been written, I am only one of many who he’s helped out, and one of many more who will be deeply sad to hear of his death.
“When I first stayed with Robert I was a broken wreck, but by the time I left 18 months or so later I felt like a fully-fledged punk rocker, and all the better for it.
“RIP Sir, your kindness is your legacy and there is no better legacy than that.”
22 December 2016
News provided by John Pring at www.disabilitynewsservice.com