Concern over ministers’ ‘failure to plan’ for blackout impact on disabled people
The government is facing questions over its apparent failure to prepare for the impact of possible power blackouts this winter on disabled people who need electricity to run lifesaving medical and independent living equipment in their homes.
National Grid ESO, which controls the flow of energy around Britain, warned this month that there could be periods this winter when it needs to order “interruptions” to customers’ electricity supply for “short periods”.
This could mean customers in some parts of the country being without power for about three hours a day, according to the Energy Networks Association.
Energy companies keep registers of customers in vulnerable situations, and should alert them in advance to power cuts and potentially provide them with heating and cooking facilities if their supply is cut off, says energy regulator Ofgem.
But there are questions over how many customers energy companies could reach if large parts of the country are facing temporary power blackouts.
And Ofgem’s website fails to detail any support that could be offered in a blackout to tens of thousands of disabled people who would need electricity to run equipment such as ventilators, other respiratory equipment, home dialysis machines, or powered hoists.
Just as in the early weeks of the pandemic, the government is now facing questions over its apparent failure to take measures to protect disabled people at a time of national emergency.
The disabled Liberal Democrat peer, Baroness [Sal] Brinton, questioned junior energy minister Lord Callanan about her concerns this week, as did the crossbench peer and professor of palliative medicine Baroness Finlay.
Lord Callanan told Baroness Brinton that the government would “do all we can to protect the most vulnerable”, but he offered no details of exactly how that might happen.
He had earlier told Baroness Finlay: “Obviously, we are doing everything we can to make sure that there are no blackouts, but if that very unlikely eventuality comes to pass, of course we will want to do all we can to make sure that the most vulnerable are protected.”
Baroness Brinton told Disability News Service (DNS) last night (Wednesday) that the minister appeared “surprised” by her question and “hadn’t understood that there were problems for disabled people and those with long-term conditions who need supplies of electricity and heating to run all their kit.
“The point is that it’s got to be organised. There needs to be a strategy and there needs to be a plan.”
She said that a representative of one of the children’s disability charities had told her that they had spoken to someone in the Department of Health and Social Care “who sounded utterly blank about it”.
She added: “I was very concerned with the minister’s response to my question, because I don’t think he understood the organisation that is needed should there be blackouts in large swathes of the country.”
She is now hoping to speak to the minister and also hopes to put down amendments to the government’s energy bill, which is currently going through its committee stage in the Lords, to ensure measures are taken to protect disabled people and those with long-term health conditions when there are power blackouts.
She is also talking to disability charities about the need to campaign for action.
She said: “This is only going to work if it’s cross-department in government and probably local government as well, as well as the major energy suppliers.
“I really hope that none of this is necessary.
“I just think no-one [in government] understands the scale of this particular problem, but I would love to be proved wrong.”
Baroness Brinton also spoke of her own family’s experience when there was a power cut on the south London estate where they live, and they had to ask for a generator from their energy provider to ensure they could power her three-year-old grand-daughter’s ventilator and heart monitor.
It took more than three hours for the generator to arrive, and by that time her son had packed up all the equipment and driven his daughter to Baroness Brinton’s home an hour-and-a-half away.
Fazilet Hadi, head of policy for Disability Rights UK, said: “The government needs to start emergency planning with health and care systems, to ensure that disabled people reliant on health-related equipment aren’t left without essential support during winter energy blackouts.”
She said it was also crucial to remember that the “dire” cost-of-living situation could leave millions of disabled people “with no choice” but to turn off their energy supply voluntarily, even without any blackouts.
She said this was because of disabled people on prepayment meters “who pay more for their supply and will be forced to disconnect when their money runs out, whatever their impairment or health condition.
“Prepayment meters should be urgently phased out and no new customers should be moved to them.”
Mark Baggley, manager of Choices and Rights Disability Coalition in Hull, who uses a ventilator at night while he’s sleeping, told DNS that he would be unable to go to sleep if there was a power cut, because his ventilator only has a battery that lasts an hour.
He said: “I could use it for an hour, but I wouldn’t be able to sleep because I can’t sleep without the ventilator; I wouldn’t be able to get my breath.”
He is registered as a customer in a vulnerable situation with his electricity supplier, EDF, but is not clear what measures they would take to support him in a power blackout.
His consultant has told him that there are about 1,000 other users of ventilators and similar equipment in Yorkshire and Humberside.
Baggley said: “I am concerned about it and I have spoken to other people who have said they are concerned as well.
“I don’t know what the energy companies have planned. You would think there must be some plan, but I don’t know what that plan is.”
He added: “It just seems like it’s another thing the government have not thought about from disabled people’s perspective because they don’t talk to us enough and they don’t listen to us enough.”
DNS asked EDF what support it would be able to offer customers like Baggley in the event of a blackout this winter.
It pointed to the website of the Energy Networks Association, which says that most customers who are medically dependent on electricity “will be familiar with the process and limitations of their equipment as power cuts can occur from time-to-time during a typical year”.
It says: “These customers often have backup power sources to keep vital equipment powered for several hours during a power failure.
“Customers who require a continuous supply of electricity for medical reasons and would need medical support during a power cut, should seek advice from their local health service provider.”
An EDF spokesperson said this morning that it was the responsibility of distribution network operators (DNOs) “to ensure customers dependent on medical equipment are protected during blackouts”.
DNOs, also known as energy network operators, own and operate the power lines and infrastructure that connect the electricity network to individual properties. In Baggley’s case, his DNO appears to be Northern Powergrid.
She said: “EDF proactively seeks to identify vulnerable customers and has robust processes in place to pass this information on to DNOs, to ensure they are aware of and can support customers like Mark in the event of a blackout.
“We recognise that some of our customers will be feeling very worried about the situation; that is why our customer operations team are conducting a full review of our preparedness for potential rota disconnections this winter and will continue to work closely with the DNOs and National Grid.”
13 October 2022
Police silent as action on disability hate crime plunges… again
The number of disability hate crime cases passed by police forces to prosecutors plummeted by a fifth last year, despite the number of allegations reported by disabled people rising by more than 40 per cent.
Police forces across England and Wales passed just 243 disability hate crime cases to the Crown Prosecution Service to decide whether the alleged offender would be charged, despite there being more than 14,000 offences reported to them in 2021-22.
This suggests that less than two per cent of disability hate crime reports resulted in a file being passed to prosecutors for a charging decision.
Disability News Service (DNS) has been tracking the annual fall in police action on disability hate crime for several years.
In 2014-15 there were 924 cases passed to CPS, but by 2018-19 this had fallen to 367, and it kept dropping, to 320 in 2019-20, to 298 in 2020-21 and to just 243 across the whole of England and Wales last year, a fall of 18 per cent in one year.
The figures, provided by CPS, were released after Home Office figures showed the number of disability hate crimes recorded by police forces rising from 9,945 in 2020-21 to 14,242 in 2021-22.
This means the number of cases passed to CPS, as a proportion of recorded disability hate crimes in that year, fell from 3.0 per cent in 2020-21 to 1.7 per cent last year.
Last year, the National Police Chiefs’ Council told DNS it was carrying out a national audit into hate crime and was planning a “thematic audit on disability hate crime reports”, while it was “working closely with our criminal justice partners to understand the reasons behind a reduction in the percentage of crimes that go to court”.
It had failed to comment on the new figures by noon today (Thursday).
CPS declined to say if it was concerned about the police figures, and said it was “a matter for the National Police Chiefs’ Council to address”.
But it said it charges every case involving disability hate crime that meets its legal test, and that it charged more such cases in 2021-22 than the previous year, with eight out of 10 of these cases resulting in a conviction.
Lionel Idan, chief crown prosecutor for London south and CPS hate crime lead, said: “Hate crime against disabled people is truly abhorrent and we have an enormous amount of sympathy and concern for victims.
“We take this issue very seriously and authorised charges in 84 per cent of the cases involving disability hate crimes referred to us in the year to March 2022.
“Upon conviction we always seek to apply for an increase in sentence to reflect the hate crime element and the success of these applications has increased from 28 per cent to 42 per cent between 2018-19 and 2021-22.
“It is crucial that we work with others to improve our response to hate crime.
“We meet with police and organisations – including those who support disabled victims – every three months and, in addition, we have discussed our work on disability hate crime with a national panel of experts, including disabled people, academics, government and the police.”
Meanwhile, Inclusion London has criticised the mayor of London, Labour’s Sadiq Khan, for failing to do more to fund local disability hate crime support services.
In a new report, Inclusion London describes how it has been working – through the London DDPO Hate Crime Partnership – for more than four years with eight other London-based disabled people’s organisations to improve their skills in supporting disabled victims of hate crime.
But none of the organisations has been able to secure ongoing funding for that work, to ensure disabled survivors of hate crime have access to independent advocates.
Louise Holden, hate crime partnership manager at Inclusion London, said: “It’s shocking that not one of the organisations has been able to get ongoing funding and frankly it’s an unnecessary waste of skills that could be used to make a real difference for disabled victims of hate crime.
“It’s no good for the London mayor to say he has a zero tolerance for hate crime without funding for services to back that up.”
A spokesperson for the mayor said: “The mayor is committed to tackling hate crime in all its forms and always has been.
“Far from cutting funding for hate crime, he has in fact strengthened and improved support for tackling hate crime, including disability hate crime, across the city.
“The mayor’s new pan-London hate crime service, the CATCH consortium, went live in October 2021 with more than a 50 per cent increase in funding for hate crime compared to the previous year.”
The mayor’s office said that its small grants programme was disbanded and replaced with this pan-London service, with funding increasing to £569,000 a year to combat all kinds of hate crime, an increase of more than 50 per cent from the previous £370,000 annual funding for hate crime.
But Holden said the CATCH funding was “inadequate”, and there was a need for “localised services”.
Three disabled people’s organisations receive funding through CATCH but they have to cover the whole of London, and they have told Inclusion London that the CATCH funding they receive is not enough to fund the work they need to do.
She said the DDPO Hate Crime Partnership has been working with the Mayor’s Office for Policing and Crime (MOPAC) “as a critical friend” and had tried to provide “solutions to gaps in services”.
But Holden said she was concerned that unless MOPAC acknowledged that more funds needed to be allocated to disabled victims of hate crime “there will be more suffering alone with no support”.
13 October 2022
Support for user-led plan to replace universal credit… and treat all claimants with respect
Disabled people’s organisations and allies have offered strong support for a user-led plan to build a social security system that treats all benefit claimants with “dignity, fairness and respect”, and replaces the government’s “chaotic” universal credit.
The plan has been drawn up by the Commission on Social Security, whose members are all people with lived experience of the current system.
The Plan for a Decent Social Security System was launched at historic Toynbee Hall in east London this week, with nearly 100 more people watching online.
Among those organisations that offered support for the plan at the launch – while also suggesting potential tweaks and improvements – were Disabled People Against Cuts (DPAC), Inclusion Scotland, Z2K and Gingerbread.
Disabled activist Ellen Morrison, co-chair of the commission, said: “The current benefits system is failing and it needs a major updating, a major overhaul, not just tweaks.
“The commission has come up with a plan for a decent social security system… it’s the most comprehensive blueprint that we’ve got for a progressive and transformative way forward that exists.
“For the plan to have any chance of success it needs other organisations and people supporting it, and working together.”
Seven other commissioners described to the launch event the current flaws in the social security system, and how the commission’s plan would address them.
Nigel Barber said universal credit had “caused chaos, havoc and despair for millions of people”, with many people experiencing it as “a chaotic and unpredictable system”.
He said: “Universal credit does not work. It is not simple, it creates instability, insecurity and debt.
“We need a system that is truly simple to understand and which provides true security and stability for all.”
Sarifa Patel, a disabled carer, spoke of the problems facing carers, disabled women, and people of colour.
She said: “Despite disabled women being more likely to be carers, you constantly face discrimination, and it is harder to access the support I require as a disabled person as it is assumed I can’t be disabled and be providing care.
“And there is institutional racism added to this, and disablism.”
Osmond James said he had applied for personal independence payment (PIP) several times and each time had been awarded zero points following the assessment.
He said: “Each assessment has felt like I am being judged, that I am expected to tell a complete stranger personal and distressing details of my life, for them to determine if I am worthy.”
He said: “The undercurrent through the whole process is one of disbelief or of making you feel unheard, or trying to find ways of denying you support.”
He said the commission found the PIP assessment process left claimants feeling “distressed, anxious, depressed, and feeling humiliated and worn down”.
La Toya Grant said the commission’s plans relied on several key principles.
She said people should have enough money to live on; everyone should be treated with dignity, fairness and respect; claimants should have the right to the social security they need; the system should be clear, accessible and friendly to everyone who needs it, while people who receive social security should be involved in devising the system; and there should be free support and advice for claimants.
Another commissioner, Barry McDonald, said: “Social security should be seen as an investment in people and an investment in the local community.
“There is definitely enough money to provide social security for all of us.”
Mike Tighe said the commission’s proposed replacement for universal credit would be to set a guaranteed decent income (GDI), with top-ups for those whose income would otherwise fall below this level.
He said: “There would be no job search requirements, no sanctions, no two-child limit, no benefit cap, no bedroom tax, no five-week wait, and no reduced rate for under-25s.
“The guaranteed decent income would… be a huge simplification of the current system and have minimal conditions, and would replace standard means-testing with a ‘light touch’ approach.”
Another commissioner, Maria McCaul, said PIP would be replaced by a new, non-means-tested benefit that covered the extra impairment-related costs faced by disabled people and was based on the social model of disability, with its design co-produced with disabled people.
The commission is now working on developing a new assessment process for this proposed benefit, she said.
There was support for the commission’s proposals from organisations that attended the launch.
Ellen Clifford, a former commissioner but speaking as a member of DPAC’s national steering group, said: “Overwhelmingly the plan chimes with what we want to see in the future social security system.”
She said DPAC “particularly welcomes” the proposal for a GDI and for a new benefit to replace PIP, and for a system that puts disability at its heart, with the involvement of disabled people with lived experience of the system.
She said: “We love the way that a GDI would be both targeted at need but also universally ensure that everyone has enough money to live on, with no conditions attached, that would stop people falling through the gaps because they were unable to navigate the system.”
She said it would also “remove the trauma of assessments and sanctions that not only cost huge amounts to administer but also leave a not insignificant section of the population traumatised, destabilised, less able to participate in society and further from employment”.
As with other representatives from organisations who spoke at the launch, Clifford raised questions and offered suggestions for improvements to some of the details of the plan.
Bill Scott, from the disabled people’s organisation Inclusion Scotland, talked about the significant changes to the social security system that have been introduced by the Scottish government and warned that any change to the system across the UK “has to be done collectively”.
He said: “The experts, as far as I’m concerned, are those who live at the sharp end of the problem.
“They know how those problems affect their lives, and they know the best solutions, and if we listen to them, we will achieve change.
“I can see that there might be a change in UK politics in the next couple of years and you need to start building the bridges to the politicians that can affect that change and convince them that the way to do it is in your report.”
Anela Anwar, chief executive of the London-based anti-poverty charity Z2K, said the plan was “rich with proposals that we fully support” and was “transformative and ambitious” and had “dignity and respect at its heart”.
She said: “We, too, believe that adequate, stable income and genuinely affordable housing are key to creating that more equal society where everyone has a chance of a dignified life.”
And Victoria Benson, chief executive of the charity Gingerbread, which supports single parent families, said her organisation was “really supportive of much of this plan”.
More than 1,000 individuals and organisations submitted evidence to the commission, through a public call for solutions, 17 workshops across the UK, a public consultation on its draft proposals – which secured widespread approval – and other activity.
Trust for London awarded funding for the project in 2018 and the commission began meeting later that year, with a brief to develop a new social security system in which claimants would be treated with dignity, trust and respect.
City Bridge Trust, the London School of Economics, and the Fraser of Allander Institute at Strathclyde University have also supported the commission’s work.
Every one of the commissioners has been or is on benefits, and all of them represent grassroots, user-led organisations that fight for the rights of benefit claimants and disabled people.
The idea for a grassroots, user-led project on the future of social security was first suggested by Dr Michael Orton, the commission’s secretary, a researcher at the University of Warwick and himself a disabled person with experience of claiming benefits.
13 October 2022
Campaigners dismiss Labour’s claim of co-production on social care review
Disabled campaigners have dismissed Labour’s claim that a review of its adult social care policy is being co-produced with disabled people.
Despite promises from Labour that disabled people would work in partnership with the Fabian Society, the thinktank commissioned to carry out the review, Disability News Service (DNS) has been able to confirm that that has not happened.
Instead, the thinktank has been developing its own proposals, based on a brief provided by the party, and has merely been consulting with disabled people and their organisations.
There has been concern about the review since Labour announced its launch in July, with both the party and the left-of-centre thinktank refusing at the time to confirm that it would be co-produced.
But the shadow health and social care secretary Wes Streeting assured DNS at last month’s Labour conference in Liverpool that the review was being co-produced.
Vicky Foxcroft, Labour’s shadow minister for disabled people, also told DNS that Streeting had promised her it would be co-produced and that there had simply been “miscommunication” about the review.
Despite that pledge, the Fabian Society refused to confirm this week that its review was being co-produced.
After initially failing to respond to emails, it eventually said only that it was working with disabled people, disabled people’s organisations (DPOs) and disability charities “as we develop proposals”.
Part of its work, it said, was how a future National Care Service “should be co-designed by a future Labour government working with disabled people”.
It said that its call for evidence “received submissions from a number of organisations”, and that it recently met with the DPO Forum England, a group of many of the country’s leading disabled people’s organisations.
That online meeting with two Fabian Society researchers took place on 5 October.
Asked again to confirm that its review was being co-produced with disabled people, and how that was being done, a spokesperson for the Fabian Society said: “We have nothing further to add at this time.”
Mark Harrison, a member of the steering group of Reclaiming Our Futures Alliance (ROFA), told DNS: “I was in the meeting with the Fabians and what is very clear is that the report they are producing is not going to be co-produced.”
Instead, he said, they were told that the thinktank would consult disabled people’s organisations alongside other “stakeholders”, likely to include private sector social care providers, local authorities and the big charities.
He said: “They are going to do their work and then they are going to report back to us.
“It’s not co-production, it’s tokenistic consultation. They already know what they are going to do.
“This isn’t putting disabled people and what is best for disabled people at the heart of plans to reform social care, and it’s not radical.”
He said there was a stark contrast between Labour’s approach with the Fabians’ review and the approach to genuine co-production adopted by Labour-run Hammersmith and Fulham council, the only local authority in the UK so far that has scrapped social care charges, and – to a lesser extent – the approach taken by the Labour mayor of Greater Manchester, Andy Burnham.
Tracey Lazard, chief executive of Inclusion London, another member of the DPO Forum England, said: “We expect and hope that the Labour party will co-produce its National Care Service policy proposals with disabled people as required by the [UN Convention on the Rights of Persons with Disabilities].
“Real co-production is vital to ensuring policies are effective and meet needs, and no policy area requires co-production more than social care.
“Our social care system is broken and we must find a way to develop, together, a radically new service fit for the 21st century that makes independent living a reality for disabled people.
“This service has to be co-produced with disabled people.
“It needs to be meaningful, specific and it needs to start now, before vested interests and the same old thinking box us in.
“So far we have had some engagement with the Fabian Society on their report but this is not co-production.
“We now need both the Labour party and the Fabian Society to sit down with the DPO Forum as a matter of urgency to agree what co-production process we will all work to.”
A spokesperson for Cheshire Disabled People Against Cuts (CDPAC), which was also represented at the Fabian Society meeting, said Labour needed to “make fundamental improvements to its attitude towards the disabled electorate”, including a commitment to “the coproduction and implementation of policy that fully upholds disabled people’s rights”.
She said there was no mention by the Fabian Society researchers of Labour’s assurances that the review would be co-produced.
Instead, there was an “unequivocal commitment” to continuing care charging under a Labour government, which was described by the Fabians as part of a “mature” and “realistic” approach.
She said the message sent to the researchers by the forum was that low-income disabled people “are being driven into debt by local councils’ care charges”.
Linda Burnip, co-founder of Disabled People Against Cuts, was also critical of Labour’s actions.
She said: “I’m not sure that Labour have actually grasped what co-production of policies actually means in reality.
“They seem to be looking for some very tame disabled people who will simply nod through their dire proposals for welfare policies and independent living.”
Labour has previously stated its commitment to co-producing social care policy, with Liz Kendall, its then shadow social care minister, telling a party conference event in September 2021 that a Labour government would not get reform right “unless the most important people, the people who use services and support, are actually driving and shaping… co-producing their services and support”.
That message was underlined by Foxcroft last month in Liverpool, when she told a fringe meeting: “We know when we get in that there’s a lot to change and it will take time in terms of all the stuff that’s been embedded, but we will co-produce with disabled people.”
Foxcroft failed to respond to messages about the review this week.
Streeting had also not commented by noon today (Thursday).
Labour’s party conference in 2019 approved plans for a National Independent Living Support Service (NILSS) model for social care reform, which was devised by the disabled people’s movement.
NILSS would provide a universal right to independent living that was “enshrined in law”, and would introduce free social care in England, funded by national and progressive taxation.
NILSS was then backed by Labour leader Keir Starmer during his Labour leadership campaign two years ago.
But Labour has since backed away from the idea of free social care, with the party’s shadow leader of the Commons, Thangam Debbonaire, telling female party members last year that introducing free social care for disabled and older people would just “give the Tories a stick to beat Labour with”.
Freedom of information requests submitted by campaigners have shown that tens of thousands of disabled people across the country are having debt collection action taken against them every year by their local authorities over unpaid care charges.
Meanwhile, in his annual review of adult social care in England, the Local Government and Social Care Ombudsman said this week that it was “seeing more cases where councils are failing to provide care, or are limiting care, while using cost as the justification”.
The ombudsman, Michael King, said: “The issues we are investigating are neither new nor surprising, but do indicate a system with a growing disconnect between the care to which people are entitled, and the ability of councils to meet those needs.
“We appreciate budgets are becoming increasingly stretched but authorities’ duties under the Care Act remain and we will continue to hold authorities to account for what they should be doing rather than what they can afford to do.”
13 October 2022
Mental health reforms ‘must go further’, MPs and peers are told
A user-led organisation has warned MPs and peers that the government’s planned mental health reforms do not go far enough and have failed to engage with disabled activists who have been pushing for a more rights-based approach.
Mary Sadid, policy manager for National Survivor User Network (NSUN), a network of groups and people with experience of mental distress, said there were concerns that the experiences of those detained under the Mental Health Act would not improve for many years, even if the reforms became law.
She agreed with representatives of non-user-led organisations that also gave evidence this week to the joint committee on the draft mental health bill that the proposed reforms included “positive changes”.
But she said: “We are really concerned about the implementation period and how long it’s going to take for some of these reforms to come into practice.”
And she said there also needed to be “adequate resourcing”, monitoring and evaluation of any changes introduced through the bill.
Sadid said NSUN believed that the bill “doesn’t go far enough” to address “racial inequity” in the mental health system.
The draft bill is based on a white paper published in January 2021, which itself was built on recommendations made by Sir Simon Wessely’s independent review of the Mental Health Act in 2018, which was criticised for falling “significantly short” of recommending full human rights for people in mental distress.
Marsha de Cordova, Labour’s former shadow minister for disabled people, said that some user-led groups had said the government’s draft bill did not comply with the UN Convention on the Rights of Persons with Disabilities (UNCRPD) and had called for a “complete overhaul”.
Sadid told her there was no consensus among user-led groups about the detail of the UN convention, but NSUN believed that Wessely’s review and the draft bill had failed to engage with the spirit of the UNCRPD and a rights-based approach.
She added: “We think that where there is consensus in user-led spaces is for pushing towards a rights-based approach and we really do think that engaging with the spirit and engaging with a rights-based approach would have been beneficial to the independent review and obviously the draft bill, but that’s just not something that we’ve seen happen.”
The draft bill, which applies to England and Wales, will reform the Mental Health Act 1983, and is being examined in detail by the joint committee before the government publishes a final version.
In response to another question from de Cordova, Sadid said that NSUN did not believe the bill would make “significant inroads” into the “disparities and inequalities” faced by racialised communities without the government taking further measures and ensuring there was monitoring and evaluation of its reforms.
She said: “We know that racialised groups are more likely to experience restrictive practice, they are more likely to be offered medication over psychological therapies; we need also to be monitoring these outcomes and seeing how they are changing.”
NSUN was among the organisations that wrote to the then health and social care secretary Sajid Javid last December to highlight institutional racism in the Mental Health Act and to ask him to commit to “publishing annual rates of detentions of racialised people and a commitment to reduce these rates”.
Lucy Schonegevel, associate director for policy and practice at Rethink Mental Illness, said her charity was “hugely supportive” of the draft bill but it needed to “go further in a number of areas”, including addressing racial inequalities.
She said Rethink “really strongly” believed that four key principles underpinned the draft legislation, as the Wessely review had recommended.
These principles are respecting service users’ views and choices; ensuring the act’s powers are used in the least restrictive way possible; supporting patients to get better, so they can be discharged from the act’s restrictions; and ensuring patients are viewed and treated as rounded individuals.
But Schonegevel said these principles should be more explicit in the bill, particularly in the wake of two documentaries in the last month which have exposed abuse in mental health hospitals, by BBC’s Panorama and Channel 4’s Dispatches.
She said the documentaries – one of which uncovered a “toxic culture” at the Edenfield Centre, in Prestwich, near Manchester, and another that exposed abuse on two wards run by Essex Partnership University NHS Foundation Trust – “showed the opposite of what these principles are trying to do are put into practice in too many places around the country”.
She said: “We hear from service-users that they actively try and avoid going into hospital to receive care.”
Sophie Corlett, director of external relations at Mind, said the charity hoped that parts of the legislation would “shift some of the balance of power to people” and away from the coercive elements of the Mental Health Act.
But she said this needed to go alongside some “extra changes” that are not in the draft bill and “an investment in changes in culture and staffing that aren’t in the act but need to go alongside it”.
Andy Bell, deputy chief executive of the Centre for Mental Health, told the committee that the draft bill “takes us in the right direction in terms of modernising the Mental Health Act, bringing many of the proposals that were in the independent review into legislation” but that it was “disappointing that not all of the elements of the independent review are in there”.
13 October 2022
Mental health reforms ‘could have unintended consequences’ for autistic people
A disabled activist has warned that proposed changes to the law that are supposed to prevent autistic people from being unfairly detained in hospital could lead to many of them ending up in prison instead.
Alexis Quinn, who is autistic herself, told MPs and peers this week that proposed new mental health legislation could have the opposite effect than intended if community support was not also improved under the government reforms.
She told the joint committee on the draft mental health bill that she had been a teacher for eight years before she was detained as an inpatient in hospital and ended up in long-term segregation after her brother died at around the same time that she was having a baby.
She spent three-and-a-half years detained in hospital before she managed to escape to Africa.
If she hadn’t escaped, she believes she would probably still be detained in the mental health system now.
The government’s draft mental health bill includes measures that would mean autistic people and people with learning difficulties would not be able to be detained under the act unless they also had a diagnosed mental health condition, or they were being assessed for one.
But Quinn, manager of the Restraint Reduction Network, said that the changes could mean someone like her ending up in prison if they had an autistic meltdown because of how they were being treated in hospital while they were being assessed.
She said: “I just don’t think this is preferable to the Mental Health Act.
“So, although, yes, I think in principle [the measures relating to autistic people and those with learning difficulties] should be taken out [of the Mental Health Act], unless we can really know that people aren’t going to be criminalised, I think that’s more life-limiting.
“It’s more life-limiting for me to have a criminal record as a law-abiding citizen.
“The [current] system is very inappropriate to detain autistic people. Having said that, I would really rather be in a hospital than in prison.
“With the right support and the right environment, this won’t happen to people.
“But what I really want to make clear is that there isn’t the right support and the right environment in this country at the moment. It’s not here.
“So we’re setting people up to fail if we don’t do something.
“I live in fear, to be quite honest, that I’ll have a meltdown in the street and the whole process can start again.”
The draft bill, which applies to England and Wales, will reform the Mental Health Act 1983, and is being examined in detail by the committee before the government publishes a final version.
Quin told the committee: “We’re taking it out because [autism] can’t be treated and we want to reduce the number of autistic people who are detained for no reason. I’m totally for that.
“But for that to work, for people not to then be detained in other settings or detained under the Mental Capacity Act, we have to change what we’re doing in the community and how we support people, and we’re not there yet.”
She said the support structures were not in place even for autistic people experiencing moderate distress, while the current system was not “responsive”.
Quinn told MPs on the Commons health and social care committee last year that “any kind of autistic reaction to a stressful life event… can and too often does result in sectioning” because of the failure to provide any community-based support for autistic people in crisis.
She described her ordeal in so-called assessment and treatment units, including “not being treated quite as a human, being told constantly that I need to get better, from what I don’t know” and being “rewarded with star charts and fresh air if I managed to look normal, [but] confined to the indoors if my autisticness, my reaction to the environment, couldn’t be adequately masked that day”.
13 October 2022
Book describes how fight for justice changed Jodey Whiting’s mother
A disabled campaigner has described in a new book how her fight to highlight the countless deaths caused by the failings of the Department for Work and Pensions (DWP), including the suicide of her own daughter, has changed her life.
Joy Dove, from Norton in County Durham, has been fighting for more than five years for justice for her daughter, Jodey Whiting, who took her own life in February 2017 after DWP wrongly removed her benefits.
Now she has written A Mother’s Job, with authors Ann and Joe Cusack, which follows both her own journey from “passive and easygoing” great-grandmother to fierce campaigner, and the story of how her daughter Jodey took her own life in despair at DWP’s decision to rip away the financial support she relied on.
Dove reveals that she still lights a candle for her daughter each night in a small shrine of mementos in her flat and – when she is at her lowest – still sprays her daughter’s favourite body spray so she can feel close to her.
She concludes that she will never recover from the loss of her daughter, but she adds: “Every day, I curse my own previous naivety, my misplaced faith in a broken system, and, in Jodey’s memory, I want to help fix it.”
The book tells how Jodey Whiting lived for her family, including her nine children, and how her childhood was marked both by her kindness and maternal instincts but also repeated “meltdowns” and troubled behaviour.
It describes how her mental and physical health steadily deteriorated from her late 20s, and it explains DWP’s crucial role in her death.
Dove writes of the “panic” in her daughter’s eyes when she received a letter from DWP telling her that her benefits had been removed, and how the decision plunged her into despair as she was left “penniless” and “drowning” in debt, with the department refusing to reverse its decision and accept her explanation for missing a work capability assessment.
The final section of the book tells how Dove found the strength to fight for justice for her daughter and others like her, with media interviews, the Justice for Jodey parliamentary petition, art-activism, a television documentary, a lengthy phone call from I, Daniel Blake film director Ken Loach, and a speech to a Daily Mirror fringe meeting at the Labour party conference, all covered by Disability News Service (DNS) over the last four years.
The book also describes her ongoing legal action as she seeks a second inquest into her daughter’s death that would probe the role played by DWP.
Only last week, she heard that the Court of Appeal had granted her permission to appeal against a high court ruling last year that refused to order a second inquest.
She concludes: “I have to believe that Jodey died for a reason, and that her death can bring about change and progress.”
DNS has been reporting on her campaign since April 2018, when an activist confronted work and pensions secretary Esther McVey about DWP’s role in Jodey Whiting’s death as she gave evidence to Scottish MSPs.
DNS helped secure legal representation for the family in early 2019, when Dove was keen to take action in the courts against DWP but could not find a solicitor.
It led eventually to solicitors Leigh Day taking on her case.
Dove told DNS this week that the campaigning had changed her life, and she thanked all those who had supported her through the last five years, including Leigh Day.
She said: “I would do it all again for Jodey and so others can get a fairer system.
“I will carry on the fight. I hope the book shows people they do not need to give in, they can fight back.”
She added: “It was difficult writing the book because it brought back happy and sad times, and Jodey not being here, and reliving the pain of finding her, which will never go away.”
This Sunday (16 October) will be Jodey Whiting’s birthday, when she would have been 48.
The family will be meeting at her grave to take her flowers, cards and ornaments to decorate her grave.
13 October 2022
Other disability-related stories covered by mainstream media this week
Struggling households will have to wait until the end of October to find out whether welfare payments will rise with inflation or be subject to a real terms cut, the chancellor has announced. Kwasi Kwarteng was accused of compounding the anxiety faced by those already at the sharp end of the cost-of-living crisis by telling them clarity would not come until his fiscal statement. Some cabinet ministers are continuing to push for universal credit to be lifted with inflation at a level of around 10 per cent, instead of the average wage rise, which stands at 5.5 per cent: https://www.theguardian.com/uk-news/2022/oct/11/uk-benefits-decision-wait-until-end-october-chancellor-kwasi-kwarteng
An NHS service helping people who are receiving mental health support with their employment will be rolled out nationally, the government has announced. The Department for Work and Pensions said £122 million was being invested to expand the service so people receiving help for common mental health conditions have access to an employment adviser. It is currently fully operational in Cheshire and the Wirral, and over the next three years will be extended nationally, with around 700 employment advisers to be recruited and trained to support up to 100,000 people a year: https://www.independent.co.uk/news/uk/dwp-nhs-government-chloe-smith-cheshire-b2199103.html
A major study on how benefit sanctions hit poor claimants’ health has been scrapped after Tory ministers quietly pulled out. The Department for Work and Pensions (DWP) has decided “not to proceed” with a long-planned project by the University of Glasgow. The research would have looked at links between benefits sanctions and family breakdown, depression and even suicide. But Professor Nick Bailey, who was heading the study, said it could no longer go ahead after DWP decided not to share data: https://www.mirror.co.uk/news/politics/major-study-how-benefit-sanctions-28202766
The number of care workers in England has fallen for the first time, leaving more people without the support they need, new figures reveal. Unfilled care jobs rose by 52 per cent in a year, the fastest rate on record, says industry body Skills for Care. One woman told the BBC the struggle to get care for her 83-year-old mother had been “a nightmare”: https://www.bbc.co.uk/news/uk-63177547
A council failed to intervene when a primary school discriminated against a disabled boy, an ombudsman has found. The boy’s father wrote to the Local Government and Social Care Ombudsman after Hertfordshire County Council did not act on his complaints. The ombudsman made a number of recommendations, including compensation of more than £15,500: https://www.bbc.co.uk/news/uk-england-beds-bucks-herts-63161128
13 October 2022
News provided by John Pring at www.disabilitynewsservice.com
