Call for urgent action as investigation finds home care deaths rose by half in pandemic
Disabled activists have called for an urgent investigation after new figures showed that deaths of disabled and older people receiving support at home from care agencies rose by nearly 50 per cent during the first 12 months of the pandemic.
In nearly 40 council areas across England, the number of deaths more than doubled between April 2020 and March 2021, compared to the 2019 calendar year, although there were significant variations across England.
In Liverpool, deaths rose from 100 in 2019 to 358 during the pandemic year, in Haringey in north London they increased from 32 to 170, and in Stockport from 53 to 194, although in a small number of areas they did fall, including Bradford and Derby.
Although the increase is likely to be linked to the pandemic, only about nine per cent of the deaths in England were reported as COVID-related.
In Scotland, the rise in deaths reported by home care agencies was even higher, at nearly 70 per cent, although there was no detailed breakdown across local authorities because of the way the figures are collected.
The increase in deaths of 49 per cent in England and 69 per cent in Scotland compares with an increase of 22 per cent in the wider population in England during the pandemic.
In total, between April 2020 and March 2021, more than 25,000 people died in England while receiving home care (compared with about 17,000 in 2019), and almost 3,000 in Scotland.
The figures come from an investigation by The Bureau of Investigative Journalism (TBIJ), which obtained data from the Care Quality Commission and Scotland’s Care Inspectorate through freedom of information requests. Disability News Service collaborated with TBIJ on its investigation.
There are no figures for Wales, because care providers are not required to notify Care Inspectorate Wales of deaths.
The figures obtained by TBIJ show high levels of excess deaths continuing through the summer of 2020 and the second wave of COVID-19 and through to March 2021.
Although previous official figures have shown a steep rise in the number of deaths in care homes during the pandemic, these are the first to show how the domiciliary care sector has been affected, although they do not include deaths of disabled people who employed their own personal assistants to provide support, for example through direct payments.
Responding to the new figures, the Department of Health and Social Care (DHSC) said it was aware of the rise in home care deaths during the pandemic and was working with local authorities to better understand the data.
It also said it was considering how to improve the inconsistent data on the causes of deaths in home care.
Anne Novis, a disabled campaigner, user of social care and a trustee and former chair of Inclusion London – although not speaking on its behalf – said: “During last year, and still continuing, social and health care has been reduced, decreasing our ability to exist, on top of the impact of prolonged austerity cuts.
“I personally know how this has impacted me with prolonged and ongoing delays in health treatments, reduction in my care package and lack of accessible mental health support.
“The impact of COVID on us is extreme. Just as with care homes, we are not thought about till its too late.
“The huge increase in unexplained deaths, for those of us receiving social care from agencies, is extremely worrying.
“It needs a proportionate response by government urgently.
“An inquiry is needed but our health and social care needs prioritising now, not while we wait for the years an inquiry can take.
“The CQC needs to be urgently reviewing all the deaths of agency clients, identifying which agencies seem to be involved the most and identifying why.”
Novis said she has previously used care agencies, as did her mother, but the standard of care was so poor that she switched years ago to using direct payments, which allow her to employ her own care workers.
She said: “These statistics reinforced my belief that standards are still poor, even if the individual carers are good.
“The system they work within, a profit-making system, makes them have to rush their care work, sadly.”
Ellen Clifford, a member of the national steering group of Disabled People Against Cuts, said too few questions had been asked about the impact of the pandemic on non-residential social care users during the pandemic.
She said: “Experiences from within disabled people’s communities during the pandemic have indicated all along that disproportionate COVID-related fatalities are only half of the story.
“There are many other ways that disabled people have been seriously adversely impacted on a disproportionate scale, with potentially fatal consequences.
“ONS figures from September 2020 show that 51 per cent of disabled people had had treatment for non-COVID conditions reduced, cancelled or postponed compared to 27 per cent of non-disabled people.”
She said disabled people had also been “de-prioritised for access to critical care” under NHS treatment rationing guidelines that discriminated against people with underlying health conditions and impairments.
She pointed to a study by critical care specialists that found that, during the first wave of the pandemic, people who scored highly on a so-called “clinical frailty score” were denied access to critical care even if intensive care beds were available.
Clifford added: “In order to understand exactly what these figures are telling us and where there are lessons to be learned, we need answers.
“At the moment, it is being left to journalists and campaigners to search for truths the government would rather conceal.
“A full independent public inquiry into the government’s handling of the pandemic is well over-due.
“If and when we get one*, we will have to ensure that the full range of impacts in all areas of disabled people’s lives – and deaths – are given the attention they deserve.”
Professor Peter Beresford, co-chair of the disabled people’s and service-user network Shaping Our Lives, said the UK government had “often failed to look at the broader consequences of their actions in response to the pandemic”.
This meant that “initial delays resulted in far greater levels of infection and death tolls than should have been the case in an advanced western society”, while “arbitrarily exporting older people from NHS beds to the care system pushed the death rate in care homes sky high”.
Of the new figures, he said: “While we need to explore these trends with further care, we have to ask if the policy and practice of this government, which has been said to give it a COVID ‘bounce’ in May’s elections, wouldn’t have actually served as more like a death blow to it, if more accurately reported and highlighted.”
Whatever the “final judgement”, he said, it would be too late for the thousands of additional older and disabled people receiving home care who appear to have died as a result.
Svetlana Kotova, director of campaigns and justice at Inclusion London, said she feared that reductions in health and social care provision during the pandemic could be an explanation for some of the increase in deaths among those receiving home care.
She supported the calls for urgent action to investigate the causes of the excess deaths, and to prioritise disabled people’s health and social care needs.
She said access to health services was often almost “non-existent” during the lockdowns for people receiving care at home, and worse than for those in care homes.
She said: “From what our surveys show, people in the community were left with nothing.
“Appointments were cancelled, there was remote meddling with doses of medication, and there were difficulties getting through to GPs.
“So many people told us about this and this must have had its consequences.”
Fazilet Hadi, head of policy for Disability Rights UK, said: “The dramatic increase in deaths of people receiving domiciliary care during the pandemic appears to be truly shocking.
“It is very important that the figures are further analysed.”
She said the figures appeared to show that most deaths were not due to COVID and so it was “important that we clarify whether causes of death were wrongly recorded or whether other factors were at play.
“We know that many people receiving social care experienced cuts to their care and the link between these reductions and the higher rate of deaths also needs exploring.”
By law, home care agencies only have to report deaths to CQC if a service-user died as a result of their care, or how it was provided, or if a care worker was in their home at the time they died.
The United Kingdom Homecare Association (UKHA), which represents home care providers, suggested one of the reasons for the steep rise in reported deaths could be that providers were reporting more deaths to the CQC “on a precautionary basis” during the pandemic, even when they were not strictly required to do so.
It said it was also possible that the government’s “Protect the NHS” message may have caused people to avoid hospital treatment, and to stay at home instead.
A UKHA spokesperson said: “The work undertaken by TBIJ highlights the lack of publicly available, complete and consistent data sets related to homecare, as in so many other areas of social care, which would help illustrate trends.
“We believe that it would be extremely helpful for the government to consider the data it collects in relation to social care.”
A CQC spokesperson said: “Providers of domiciliary care services are not required to notify CQC of all deaths of people who use their services and the data should therefore not be taken to represent a full and accurate representation of the number of people who use domiciliary care services who have died.”
A DHSC spokesperson said: “Every death from COVID-19 is a tragedy and we have ensured good quality home care remained a priority throughout the pandemic with an approach informed by the latest scientific advice.
“The adult care sector has received priority for vaccines preventing more than 10,000 deaths in older adults and we have provided billions of pounds in funding including for [personal protective equipment] and testing.
“Vaccines are the best way to keep people safe and over 35 million people in the UK have now been vaccinated with at least one dose and a third of adults have received a second dose meaning they have maximum protection from the virus.”
TBIJ is keen to hear from those with experience of the home care system, including disabled and older people receiving assistance, those who work in home care, and those caring for relatives and/or involved in advocacy. Use this link to leave a voice note or send a message
*The prime minister announced yesterday (Wednesday) that an independent public inquiry into the response to the pandemic would begin next spring
13 May 2021
Families of DWP victims want chance to confront ministers over benefit deaths
The families of two disabled people whose deaths were caused by Department for Work and Pensions (DWP) failings say they want the chance to confront ministers in parliament, so they can describe to them the damage their actions have caused.
The families of Philippa Day and Errol Graham spoke out this week after confirming that they would each be taking legal action against DWP.
Both families hope their legal actions will force improvements that will save the lives of other claimants of disability benefits.
The family of Philippa Day, whose death was blamed by a coroner on flaws in the disability benefits system, have begun a legal claim against DWP – and its private sector contractor Capita – for breaches of human rights and negligence.
It is likely to be a difficult case for both DWP and Capita to defend as coroner Gordon Clow highlighted 28 separate “problems” with the administration of the personal independence payment system that helped cause her death, at the end of a nine-day inquest in January.
Meanwhile, the family of Errol Graham are seeking permission to take their case to the court of appeal, after the high court ruled in March that DWP had not acted unlawfully in October 2017 by wrongly cutting off his employment and support allowance, a decision that led to him starving to death months later.
Both families are represented by solicitors Leigh Day.
They each spoke this week of their wish to give evidence in person to the House of Commons work and pensions committee.
Alison Turner, the fiancée of Errol Graham’s son, told Disability News Service (DNS) that she would like to see the committee invite relatives of those who have died to give evidence, and for that to happen in front of work and pensions secretary Therese Coffey and Justin Tomlinson, the minister for disabled people.
She said she would like to see the families confront Coffey “face to face” and “put that pain across to her”.
She said: “When she’s confronted with the families that she’s sat there and let suffer then it will be harder to ignore.
“They need to see the damage that it has caused.
“They need to feel how we feel, because they are almost emotionless, they are detached, and they need to attach themselves, because they need to understand the severity of this for these families.
“And until they start to understand that, they will never get it right.”
Turner said the deaths of Errol Graham, Jodey Whiting, Philippa Day and Roy Curtis were all linked to DWP’s failures around claimants with mental distress.
She said: “There’s something seriously wrong. There’s a pattern here and that’s what drives me.
“The DWP aren’t making the system work for people like them, and it’s not good enough.
“How many more people with mental health are going to die because they have been disadvantaged, because that reasonable adjustment is not being recognised?”
She added: “DWP see all these deaths and they can’t say they don’t see the link to mental health, they just don’t want to admit that there is a serious problem in the department when it comes to making reasonable adjustments for mental health.
“The more families that stand up to them, the harder it is for the government to ignore.
“The problem with DWP is that it separates itself from the damage it does. It’s almost inhuman. It doesn’t feel the pain, and I think it needs to.
“It needs to stop. It’s just not good enough for the DWP to sit there and say, ‘We didn’t do anything wrong.’ They did.”
Imogen Day, Philippa’s sister, said she would also like to see families of those who have died give evidence to the work and pensions committee, and supported the idea of this happening in front of Coffey and Tomlinson.
She said: “I want to meet them, I want to see them and I want them to explain to me exactly how they allowed this to happen.
“I want to be sat down and given word for word exactly the reasons why my sister had to die.
“That’s the bit I am struggling with. I want to know why it benefited somebody in a political way for the system to have continued for so long.
“I want to know why the benefits outweighed the costs, and those costs being lives.”
She said she believed that if the cases being brought by families against DWP “takes enough of a financial toll” it will eventually be forced to act to make the system safe.
She stressed that any compensation the family secures will be put aside to ensure that Philippa’s young son is well cared for as he grows up.
Day said that it felt as if there was now momentum in the battle to secure justice and change within DWP, with their cases and a high court case being brought by the family of Jodey Whiting, who are trying to secure a second inquest into her death.
She said: “I want them to be scared. I hope [Iain Duncan Smith] goes to bed at night thinking about all these families.
“I want him to be afraid, because we were scared, we spent months before Pip died knowing this was coming and that we couldn’t do anything about it, and feeling that fear.”
She said: “DWP needs to be over-hauled and an independent inquiry is needed to evaluate why all of this happened and why it was allowed to happen, what failsafe failed for so many people to die.
“It is just so stressful that we as families are having to do this.
“I can’t just move on with my grief. I am having to politically argue for her, which is fine, I will do it to the end of my days, but it’s not my job.”
Both Imogen Day and Alison Turner backed the idea of an independent inquiry into the years of deaths linked to DWP, after Labour’s Debbie Abrahams repeated her call for an inquiry this week.
In 2019, more than 55,000 people signed the Justice for Jodey Whiting parliamentary petition, which included a call for an inquiry.
Imogen Day told DNS: “I will not rest until there is one, a full independent inquiry.”
Abrahams has led parliamentary efforts to hold DWP to account for the deaths, including pushing the Equality and Human Rights Commission to hold its own inquiry.
Last month, DNS reported how the watchdog appears to have backed away from holding a wide-ranging statutory inquiry into links between DWP and the deaths of claimants.
Leigh Day’s Merry Varney, who represents Philippa Day’s family, said that, although the coroner “reached a damning conclusion about the role of DWP and Capita in causing Philippa’s death, if the matter is unresolved, the high court will look itself at the circumstances of Philippa’s death and the lawfulness of the acts and omissions by the DWP and Capita”.
Her colleague Tessa Gregory, who represents the family of Errol Graham, said: “Our client is appealing the high court’s judgment because she considers that the judge was wrong to hold that DWP safeguarding policies are lawful.”
She said that Turner “wants to ensure that the system is fit for purpose” and takes proper account of the difficulties faced by people in mental distress in engaging with DWP.
A DWP spokesperson said: “Our sincere condolences remain with both Miss Day’s and Mr Graham’s family. It would be inappropriate for us to comment further at this time.”
A spokesperson for Capita said: “We are very sorry for the mistakes we made in processing Philippa’s personal independence payment claim and the additional stress this caused her.
“In partnership with the DWP, we have considered and reviewed the coroner’s report and we are implementing all the recommendations that are relevant to us.
“Following this incident, we have strengthened our processes and we are working to continuously improve and deliver a professional, efficient and kind service for every PIP applicant we assess.
“As legal action is ongoing, we will not be commenting further.”
Meanwhile, DWP continues to refuse to release recommendations made by its own secret reviews into the deaths of benefit claimants over the course of nearly two years.
DNS first reported last December that DWP had admitted to carrying out 82 separate investigations into deaths and other serious incidents linked to its actions between January 2016 and March 2019, in addition to 60 earlier reviews carried out between 2012 and 2015.
Despite an information rights tribunal ruling in 2016 that the recommendations made by such reviews should be released, DWP argued last year that releasing recommendations from reviews carried out after March 2019 could interfere with the development of government policy.
There are now likely to have been about 200 secret DWP reviews into deaths and other serious incidents since 2012.
A DWP spokesperson refused to explain why the latest IPRs continued to be withheld, but he did not dispute the estimated number of IPRs carried out since 2012.
He said in a statement: “We support millions of people a year and our priority is they get the benefits to which they are entitled promptly and receive a supportive and compassionate service.
“In the vast majority of cases this happens but when, sadly, there is a tragic case we take it very seriously.
“In those circumstances it’s absolutely right we carry out an internal review to check if the correct processes were followed and identify any lessons learned to inform future policy and service.”
13 May 2021
Watchdog warns social care is at ‘crisis point’ and calls for legal right to independent living
The equality and human rights watchdog has warned that social care is at “crisis point” and has called on the government to introduce a legal right to independent living, just 24 hours after Boris Johnson failed again to honour his promise to fix the system.
The Equality and Human Rights Commission (EHRC) said yesterday (Wednesday) in a new briefing paper that many disabled people were being left “without the vital support they need to live independently” as part of their community.
It warned that, since the first of a succession of Tory-led governments came to power in 2010, “rising demand and substantial reductions in government funding have led to increased levels of unmet need”, with real-terms council spending on social care in England about £400 million lower in 2018-19 than in 2010-11.
And it said the pandemic had “pushed the already struggling adult social care sector to crisis point, posing a significant threat to the right to independent living”.
As Disability News Service revealed last month, the commission is set to use its powers to examine how the social care system can “better uphold human rights and equality” through the system of assessing needs and making decisions on social care packages.
The EHRC paper was published just a day after the prime minister was heavily criticised for failing to include clear proposals to reform social care in the Queen’s speech.
Successive Tory governments have been promising to bring forward proposals to reform social care for at least four years.
Labour leader Sir Keir Starmer said it was “unforgivable that there is no clear plan to fix social care”, adding: “Failure to act for a decade was bad enough, but failure to act after the pandemic is nothing short of an insult to the whole nation.”
Rather than promising legislation, this week’s Queen’s speech said only: “Proposals on social care reform will be brought forward.”
Background notes later published by Number 10 said the proposals would be brought forward this year.
But just a day later, the EHRC briefing paper criticised the government across a range of areas linked to independent living in England.
Among the areas in which it calls for action are the unfair detention and treatment of people with learning difficulties and autistic people, inclusive education, social security, accessible housing and accessible transport.
But its key proposals for change focus on the need for “effective legal protection” for disabled people’s right to independent living under article 19 of the UN Convention on the Rights of Persons with Disabilities.
The EHRC paper includes a new legal model for how it believes a right to independent living could be incorporated into UK law.
A key element of the model would be a new duty on public bodies such as local councils to assess the level of unmet need for housing in the community, and for care and support that would enable community or home living, and to “report on what they will do to meet that need”.
The government would have to report on the level of unmet need and what it would do to ensure those needs were met.
There would also be a new duty on councils and other public bodies to provide housing and care and support in the community, unless the disabled person wanted to live in residential care.
There would also be effective enforcement mechanisms to “help ensure the right to independent living is upheld in practice”; a ban on building new institutional accommodation; and a new duty on public bodies to “act with the objective of meeting the requirements” of article 19.
The Department of Health and Social Care had not responded by noon today (Thursday) to a request to comment on the briefing paper.
13 May 2021
Campaigner horrified as G4S puts ‘do not resuscitate’ on her file before ambulance trip
A controversial outsourcing company is refusing to act after one of its ambulance crews was mistakenly told that a disabled campaigner had agreed to have a “do not attempt resuscitation” (DNAR) order placed on her records.
Anna Morell was about to use a non-emergency G4S ambulance to take her to a routine appointment when one of the paramedics asked for written proof that she did not want them to attempt to resuscitate her if her heart or breathing stopped on the journey.
She was horrified when the paramedic showed her his mobile phone screen, which showed he had been given the instruction: “Pick up DNR.”
Although he immediately called a G4S colleague and ensured the note was taken off her records, Morell said the incident was “deeply disturbing” as she is always extremely clear with G4S that she does not have a DNAR in place.
Morell, media and communications manager for Disability Rights UK, was later told there had been an administrative error, but she said the mistake was “inexcusable”.
There have been repeated, serious concerns raised about the wrongful placing of DNAR notes on disabled people’s medical records throughout the pandemic.
In March, the Care Quality Commission (CQC) found more than 500 DNAR decisions put in place since 17 March 2020 “had not been agreed in discussion with the person, their relative or carer”.
The true figure will have been even higher because the number was based on responses from only about 2,000 of the 25,000 adult social care providers CQC approached for information.
G4S said this week that its crews always ask for confirmation that a DNAR is in place before starting a journey, and that a verbal apology was made to Morell when the crew member realised the error had been made.
Morell said she had been “incredulous” when she realised the crew had been told that she had a DNAR in place.
She said: “The crew took swift action to have it removed, and reassured me that the protocol is to visually see the document, without which they have to resuscitate regardless of whether a patient verbally insists they have [a DNAR].”
But she said that people are “fallible”.
She said: “If the process goes wrong at the admin end of the process, it can also go wrong at the sharp end of the process.
“Disabled people, myself included, are extremely nervous about the ability of third parties to place erroneous information about DNAR notices on our records.
“This has happened in care homes at the start of COVID, it has happened at care homes outside of COVID, and I know other disabled people who have also found out from patient transport crews in other parts of the country that they have had DNAR notices placed on their records in error.
“A simple slip of a key without due care and attention can be the first step in a domino effect which leads to loss of life.”
She said G4S needed to implement a “failsafe process from start to finish” to ensure that such an error “unequivocally cannot happen”.
She has suggested to G4S that it uses clearer wording when its call centre staff question service-users about whether a DNAR is in place, one that requires a yes or no response, and that a copy of the booking details is sent to those passengers who can use email as a “failsafe”.
Kamran Mallick, chief executive of Disability Rights UK, said: “Disabled people’s confidence and trust in systems were shaken last year when we heard about DNRs being applied to them without consent during the pandemic.
“I have also been consistently asked if I have a DNR in place when booking hospital transport.
“It is chilling to be asked this again and again and Anna’s experience demonstrates that an administrative error could lead to a devastating outcome.
“Bland reassurances that the ‘error has been corrected’ are far from reassuring.
“How many similar errors have not been identified?
“The NHS and its contractors must stop working from the assumption that disabled people’s lives are of less value.”
Morell regularly uses the G4S non-emergency patient transport service (NEPTS), which is provided through a contract with NHS Kent and Medway Clinical Commissioning Group.
Last month, G4S admitted forcing disabled patients to share non-emergency ambulances throughout the COVID-19 pandemic, although it insisted that it was following NHS guidance.
This week, G4S refused to say how the mistake was allowed to happen; how seriously it took Morell’s complaint; and what action it would take to ensure that it never happened again.
Instead, a G4S spokesperson said in a statement: “The safety of those using our service is of paramount importance, which is why we have processes in place to identify any recording errors at the first opportunity.
“Our crew will always ask the patient for confirmation of a ‘do not attempt cardiopulmonary resuscitation’ (DNACPR) form before a trip, and without this confirmation, the crew would start resuscitation in the event of cardiac arrest.”
13 May 2021
NHS England ‘must do more’, despite ordering reviews of ‘unsafe’ mental distress scheme
Disabled activists have demanded stronger action from NHS England over the use of a mental health scheme they have branded unethical, unlawful and unsafe, despite a senior NHS figure telling individual trusts to review their use of the programme.
There has been mounting concern about the use of the Serenity Integrated Mentoring (SIM) system, and its rapid rollout across the NHS in England, despite the lack of quality research into its impact on mental heath service-users.
But concerted campaign pressure by the StopSIM coalition has now led to NHS England’s national clinical director for mental health, Tim Kendall, writing to mental health trusts, calling on them to review their use of the scheme.
The coalition said yesterday (Wednesday) that, although it was “reassured” that some action was being taken, NHS England needed to co-ordinate an immediate independent investigation into the use of SIM-type schemes.
In his letter, Kendall admits that the SIM model was chosen as part of an NHS Innovation Accelerator programme in 2018, but he insists that NHS England “is not formally endorsing or promoting” the spread of the SIM scheme.
But the coalition said yesterday that the SIM model had been endorsed by several key NHS figures and pointed to evidence that NHS England had encouraged its widespread rollout.
In a lengthy, detailed and evidenced statement, it said it believed that NHS England had a “statutory duty” to carry out a “more robust and centrally coordinated investigation in view of the severity of concerns regarding SIM”.
It said: “We are reassured that NHS England have acknowledged our concerns and are planning to take actions in response.
“We agree, a review is essential in order to address concerns and in order to take robust actions as appropriate.
“However, we remain concerned that this response does not appropriately reflect the urgency and magnitude of the issues we have highlighted.”
It added: “Due to the severity of risk posed to service users under SIM, we consider a centrally coordinated investigation of urgent importance.”
It also repeated its call for NHS England to “halt the rollout and delivery of SIM with immediate effect”.
The National Survivor User Network (NSUN), which has backed the coalition’s campaign, welcomed the statements by NHS England and other bodies in response to the campaigning by the coalition.
But NSUN said there were questions over how the SIM schemes had been commissioned, and allowed to spread across the NHS in England, and who was responsible for these decisions.
Akiko Hart, NSUN’s chief executive, said: “SIM did not appear in a vacuum.
“Its adoption and scaling point to lazy and opaque commissioning processes, a focus on what is useful for services instead of what might be helpful for service-users and patients, and a normalisation of toxic cultures which harm and neglect people in distress seeking support.”
In his letter, Kendall points to concerns raised by the coalition about how SIM schemes involve police officers in the case management of people with complex mental health needs, the lack of research data on the impact of the scheme on patients, and whether SIM breaches treatment guidelines for personality disorder and self-harm care.
He also tells mental health trusts that concerns have been raised about the legal basis for sharing patient records under the scheme, and “the human rights and equalities implications” of the SIM approach.
He says in the letter that he is asking trusts to review their use of SIM “in light of the lack of evidence base for the interventions provided by this model and the concerns raised by patient groups about how it is being implemented”.
In a letter sent this week to the StopSIM coalition, Claire Murdoch, NHS England’s national mental health director, says trusts are being asked to examine whether the scheme breaches guidelines for personality disorder and self-harm care, and if it compromises “patient safety or human rights”.
She says in the letter that NHS England guidance states that such services “must have a compassionate, trauma-informed ethos and reject punitive approaches to care” and should be co-produced with people with a diagnosis of personality disorder.
Last month, Disability News Service (DNS) reported how the organisation that supports SIM schemes – the High Intensity Network (HIN) – said it was already working with 23 of 57 mental health trusts in England.
Paul Jennings, HIN’s director and the founder of SIM and himself a former police officer with experience of using mental health services, admitted to DNS last month that there was a need for an independent review of the programme.
13 May 2021
New BSL co-operative ‘could transform the future of interpreting’
A partnership between Deaf people and British Sign Language (BSL) interpreters could be set to transform the future of interpreting across the UK.
Leading Deaf figures are supporting a new co-operative that is developing an online platform that they hope will “revolutionise” the booking of interpreters, “take control” from profit-making agencies and deliver “real and long-lasting social change”.
They have already raised more than £240,000 for Signalise through a community share offer which closes on 14 June, with the hope of raising at least £300,000.
They hope eventually to compete for public sector contracts with the larger interpreter agencies, with locally-run services delivered through a national structure, and a central role for Deaf people and interpreters in running local services.
They believe this will ensure that qualified BSL interpreters are paid a fair rate for their work, while Deaf service-users will be able to access a high-quality service.
One of the co-operative’s highest-profile supporters is Jenny Sealey, chief executive and artistic director of Graeae Theatre Company, who was co-director of the London 2012 Paralympics opening ceremony.
She said: “My work as the artistic director of Graeae Theatre Company is all about inclusion and bringing people together.
“The ethos of a co-operative where Deaf people and BSL interpreters work together to innovate and develop a service that meets everyone’s needs, fits perfectly with this.
“I fully endorse this initiative and hope that we see it replicated in many other areas of need.
“I urge everyone to support Signalise and this model of collective working.
“It does much more than merely provide a service when people come together – it is a powerful source of societal change for the common good.”
Kerena Marchant, who stood for Labour at the last general election, said that Deaf people and interpreters had lost out in recent years through the emergence of profit-making BSL agencies which have taken over services previously provided by local councils.
She said: “There has been a decline in working practices and standard of provision.
“With most video relay interpreting companies becoming part of American companies, the Deaf community face a potential further deterioration in interpreting services and interpreters in working practices.
“Signalise is the future of interpreting – both the Deaf community and the interpreters can benefit, with dividends being put back into the Deaf community and ‘continuing professional development’ for interpreters.
“Deaf users can also have more say in how their service is provided and how their needs are met.”
Deaf campaigner Geraldine O’Halloran, one of Signalise’s directors, said: “I have used BSL interpreters for over 30 years now, and there has never been an opportunity like this one: to become a member of a co-operative and make a mark on the BSL interpreting service.”
She said it was important that Signalise was a partnership between Deaf people and BSL interpreters, which would ensure that Deaf people’s ideas, opinions and suggestions were treated equally to those of interpreters.
She said that Deaf people who were members of the co-operative would be able to “feel a sense of ownership and empowerment”.
O’Halloran added: “Signalise is not a group of passive receivers of BSL communication services, but active members who can support and influence the work of Signalise.
“To me, that has to be worth having.”
Another Signalise director, BSL interpreter Nicky Evans, said: “Over the past decade we have seen the larger spoken language agencies taking over who have no knowledge or experience in working with Deaf people and don’t understand the community’s needs.”
She said the tender process for these contracts had excluded Deaf people and interpreters.
Evans said: “In a co-operative model, it is very clear who owns and runs the company and it is run for the benefit of the community.
“We have been talking about the possibility of a co-operative for some time but felt that the traditional model wouldn’t work.”
Evans said that Signalise’s online model would allow the service “to be accessible and ensure it reaches everyone”.
She added: “There are so many possibilities for creating real and long-lasting social change.
“We are all very excited by this.”
13 May 2021
Brown Envelope Book ‘illustrates cold-hearted barbarism’ of DWP
Scores of disabled people who have been brutalised by the bureaucracy of the Department for Work and Pensions (DWP) have contributed to a new anthology of poetry and prose that describes their ordeals in “graphic and heart-rending detail”.
The Brown Envelope Book* is co-edited by two disabled writer-activists, Alan Morrison and Kate Jay-R, and contains more than 200 poems, pieces of prose and short plays, the majority of them written by disabled claimants of benefits.
The overall theme of the book is the “brown envelopes” in which DWP sends its letters to claimants, but many of the contributors describe the work capability assessment process, the experience of visiting jobcentres or, in Kate Jay-R’s own How The DWP Ruined Vivaldi For Me, waiting on hold for a DWP adviser to answer the phone.
In his introduction, Morrison calls DWP’s brown envelopes the “paper symbols of state malice towards its claimants” and “agents of malignant governmental origami”.
Among the many highlights of the anthology are Steph Pike’s £53 A Week, which imagines how former work and pensions secretary Iain Duncan Smith would have fared if he had tried to fulfil his 2013 boast that he could live on £53 a week in benefits.
Another, Posting Icicles, by Scottish poet Lynn Valentine, describes how her letterbox “chokes on brown envelopes”, while Work Capability Assessment, by Louisa Campbell, compares the fitness for work test to a brutal, physically violent interrogation.
A foreword to the book has been written by its patron, disabled activist John McArdle, co-founder of the grassroots group Black Triangle.
He says in the foreword that the book “illustrates the trials of claimants with stories of individuals who have been subjected to this cold-hearted barbarism in graphic and heart-rending detail” and will “enlighten all who read it as to the ongoing injustices being perpetrated upon ordinary people by other ordinary people working as bureaucrats in our country”.
Morrison has previously published two influential anti-austerity anthologies, Emergency Verse – Poets in Defence of the Welfare State, published in 2010, and The Robin Hood Book – Verse Versus Austerity, the following year.
Jay-R is the author of the anti-austerity blog Diary of an Armchair Campaigner, which she began writing following the death in 2012 of Karen Sherlock, who died after fighting for two years against the unfairness of the work capability assessment.
She is also founder of the Don’t Go Breaking Our Arts disability arts Facebook group.
*An ebook version has been published by Caparison, an imprint of The Recusant, in collaboration with the Don’t Go Breaking Our Arts Facebook group and the Culture Matters co-operative of writers and activists. A print version will be published this summer. The ebook can be ordered, for £4, at: https://www.therecusant.org.uk/the-brown-envelope-book/4595276669
13 May 2021
News provided by John Pring at www.disabilitynewsservice.com
