NHS trust tells people with muscular dystrophy: ‘We’re keeping your ventilator filters for patients with coronavirus’

An NHS trust has told disabled people with life-limiting conditions that it will no longer supply replacement anti-bacterial filters for the ventilators that keep them alive because stocks are running low and they are being reserved for patients with coronavirus.

Horrified patients with muscular dystrophy say that Royal Brompton and Harefield NHS Foundation Trust (RBHFT) is putting their lives at risk by prioritising non-disabled people with COVID-19 over those with long-term health conditions.

Disability News Service (DNS) has spoken to two disabled people who rely on the filters to protect them from infection while they use their ventilators, and have both been told that as stocks are running low the trust will no longer give them replacements.

Both have been told that the trust’s remaining filters are being directed instead towards patients with COVID-19.

One of them was told in an email: “With the recent Coronavirus outbreak unfortunately, we have been instructed by management not to send any antibacterial filters until further notice.

“The limited stock we have is being directed towards patients infected with COVID-19.”

They have been told either to run their ventilators without filters or to continue using old ones.

It is the latest in a series of cases in which NHS managers or healthcare professionals have appeared to discriminate against disabled people with long-term conditions during the pandemic crisis.

Among incidents that have caused concern have been a care company that said GPs had written to three of its services for people with learning difficulties to say they had decided that all their service-users should be deemed “do not resuscitate” if they became ill with coronavirus.

Another was a Welsh GP surgery which wrote to patients with life-limiting conditions asking if they could complete “do not attempt resuscitation” (DNAR) forms on their behalf, partly so that “scarce ambulance resources can be targeted to the young and fit”.

DNS reported in March how the National Institute for Health and Care Excellence had been forced to update guidance on which coronavirus patients should receive intensive care treatment, after concerns raised by disabled activists.

The previous week, DNS had revealed how an NHS critical care consultant appeared to suggest publicly that he and his colleagues would not attempt to resuscitate many older and disabled people if they became seriously ill with coronavirus.

Now concerns have been raised over the use of ventilator filters at RBHFT, and potentially at other trusts across the country.

Hannah*, one of those refused replacement filters by Royal Brompton and Harefield, said: “Filters are a vital part of using the ventilator as they clear the air we take in, which in turn keeps our carbon dioxide levels down.

“This is putting the lives of many at risk.”

She said a friend of hers, who also receives treatment at the trust, had also been told that anti-bacterial filters were no longer being given to people with muscular dystrophy because they were being reserved for COVID-19 patients.

Hannah said she had been receiving care from the trust for many years and had never previously been told that there were no available replacement “disposables” such as filters, or the masks and hoses she also needs to wear while using her personal ventilator.

She has also been told by her respiratory consultant to use her ventilator 24 hours a day throughout the pandemic – compared to 20 hours a day previously – which means the filters will become dusty and contaminated more quickly.

Last year, when Hannah’s oxygen levels were low, she was told this was partly because the filter was filthy and needed changing, as it had not been replaced for four weeks.

David*, another of those who asked the trust for some replacement filters, said he was told – twice – that an email had been circulated among Royal Brompton and Harefield staff to say their stock of filters was running low and so they were being reserved for COVID-19 patients.

David, who has just one functioning lung and has been using the filters for more than 10 years, said he had managed to source some replacement filters privately, but was still angry at being seen as a lower priority for life-preserving treatment than COVID-19 patients.

He said he believed his rights had been breached.

He said: “I feel I am being pushed to the bottom of the list below other sick people who have never used this equipment before.

“I understand they need it because they are sick but there are also a lot of people who are sick who don’t have COVID-19 and have been relying on ventilators their whole life.

“I’m not saying people with COVID-19 shouldn’t have the equipment, I’m saying please don’t take it away from people who need it as well.

“I’m relying on medical equipment for the right to live. When I was diagnosed with my condition I was in quite a serious way, I was very low on oxygen, very high on carbon dioxide, and I was relying on my ventilator to keep me alive.

“Even though I only use it at night, I would get a build-up of carbon dioxide in my blood again and my oxygen levels would drop if I didn’t use it.”

He added: “They haven’t sent any letters out to me to say that this [lack of filters] is an issue… and they haven’t explained how it could affect my health.

“That’s not good enough. If I don’t need them, why was I given them?”

A spokesperson for the trust originally claimed in a statement that it was “sending patients filters for their ventilators as and when they are needed and especially when there is a clear and urgent need for a new filter”.

She said the “pandemic and issues around supply encouraged a review of all our processes but we would never compromise the safety of one group of patients over another”.

After this reply was challenged by DNS, she said the trust had “reduced the numbers of filters being sent out and patients have been asked to extend the life of those they have, due to the numbers available in the system”.

She also said that the trust regretted if it had given the impression that it had compromised the safety of one patient group over another.

But David said the trust’s statement was “completely not true”, and insisted that he had contacted the trust twice and on both occasions had been told the filters were not being supplied and to use his ventilator without a filter, and that this step was being taken because the remaining filters were being reserved for COVID-19 patients.

He said that one of the staff he spoke to had told him that this message – not to give the filters to patients with muscular dystrophy because they were being reserved for COVID-19 patients – had been included in an internal memo.

DNS has also seen a blog by another disabled person with muscular dystrophy, Mitch Coles, who receives care at another hospital trust, and has been told he will need to start using his ventilator without a filter once his existing supplies run out.

He said: “I was told there was ‘no evidence’ that filters need to be used in a home environment.

“What’s the difference between a hospital and a home environment in terms of filter use?

“If they aren’t necessary, I want to see evidence that says so.

“If they aren’t needed, then what are they made for and why have I been using them for my machines for the past five to 10 years and been told to regularly change the filters, especially when I’m unwell?”

Disabled campaigner Fi Anderson, who has muscular dystrophy and receives treatment at a hospital in Manchester, said she believed that people with progressive muscle-wasting conditions were facing discrimination over the filter issue, particularly as many of them have also been targeted by GPs to agree DNAR forms “to take the strain off the NHS”.

She said: “I can’t help but feel we are being discriminated against for our human right to have a fighting chance like everyone else.

“Like many others with progressive muscle-wasting conditions, I wasn’t expected to reach adulthood but thanks to these machines I have and I have a great quality of life despite the extra medical equipment, being wheelchair dependant and needing carers.

“I manage my own team of personal assistants, I have a job with a non-profit close to my heart that is rewarding and that I love, I flew the nest and live with my fiance and had children who didn’t inherit the condition.

“I did everything doctors told my parents I’d never do, yet it may not be enough to prove I’m worthy during these uncertain times.

“I have every reason to stay alive [but] I could easily be seen as just a case number, with an incurable condition with no quality of life because I use a ventilator. A drain on the NHS.”

*Not his or her real name

**Links to sources of information and support during the coronavirus pandemic include the following:


Inclusion London

Disability Rights UK

The Department of Health and Social Care

National Survivor User Network

Spinal Injuries Association

COVID Mutual Aid UK

Disability North

Disability Wales

Citizens Advice

Inclusion Scotland

7 May 2020


Coronavirus: MPs hear of disabled people’s struggle to survive pandemic

Disabled people have described how they have been abandoned by the UK government, local authorities, and the supermarket giants, as they struggle to survive during the pandemic crisis.

Their descriptions of their experiences over the last two months are included in evidence provided by the pan-London disabled people’s organisation (DPO) Inclusion London to an inquiry by the House of Commons women and equalities committee.

Inclusion London has told the committee about the lived experiences of some of the nearly 300 disabled people who responded to a survey on the impact of the pandemic, as well as evidence from some of the 70 DPOs Inclusion London supports in the capital.

Other user-led organisations have also shared their responses to the committee this week, with both Disability Rights UK and WinVisible revealing evidence of the serious impact that measures to tackle COVID-19 have had on disabled people.

All three DPOs have submitted their responses to the committee for its inquiry into the impact of the pandemic on groups protected under the Equality Act.

Inclusion London said its evidence showed that the reality for many disabled people who use social care was now “stark”, with staff shortages, a lack of personal protective equipment (PPE), “sometimes a complete lack of communication or support from the local authority and high levels of anxiety and fear”.

It told the committee: “People are having to make an impossible choice of either protecting themselves and self-isolating without support or taking risks and receiving essential support even though this support might expose them to covid-19.”

One user of council-funded support told Inclusion London: “My care agency is not getting adequate PPE, and they are so short-staffed at present that I’ve been lucky to get a shower once a month.

“I am not getting one in three of my daily care calls.”

Another said they had had to “fight” for three weeks to obtain the PPE they needed for their personal assistants (PAs).

They added: “Social Services have been appalling. We feel abandoned. And despite being on the government’s vulnerable list, we can’t get a shopping delivery for another 10 days.”

Problems with securing food and other groceries were also mentioned frequently to Inclusion London.

One respondent said the supermarkets had “thrown their existing physically disabled customers under a bus”, after prioritising home deliveries for those with certain long-term health conditions who have been placed on the government’s “clinically extremely vulnerable” list.

Another said: “Being blind and living alone with no support nearby, I cannot physically attend a supermarket as I require a member of staff to guide me around the shop.

“I have no idea where my next meal is coming from.”

But Inclusion London’s evidence also included some positive examples of local authorities that have taken a “proactive approach” to disabled people’s rights.

Medway Council in Kent “mapped out existing support networks for each service user weeks before the lockdown” and then supplied PPE directly to service-users, as well as setting up a scheme in which available PAs could be redeployed to support other users of social care who were low on staff.

Hammersmith and Fulham council in London, which has been working closely with disabled people to co-produce policies, “reassured service users that existing levels of support would be maintained” and “allowed a lot of flexibility in terms of how social care needs can be met”.

And Tower Hamlets council in east London worked closely with the local DPO, Real, to ensure that disabled people’s social care needs were addressed.

Among concerns raised by Inclusion London in its evidence were the impact of the controversial guidance that was released – and later amended – by the National Institute for Health and Care Excellence (NICE) on which patients should receive intensive care treatment, and letters some patients received from GPs encouraging them to agree to a “do not attempt resuscitation” (DNAR) note being placed on their medical records.

One disabled person with a mental health condition who took part in the survey described how they had been too scared to leave their house for nearly a month – which left them feeling “trapped and controlled and claustrophobic” – because they now believed that “as someone with pre-existing conditions, doctors will leave me to die in favour of someone who has a better chance of surviving”.

Inclusion London said the government’s failure to assess the impact of its policy decisions on disabled people was “largely due” to its inability to engage with DPOs as it developed policies that made disabled people “doubt our lives are of equal value”.

Disability Rights UK (DR UK) told the women and equalities committee, in its submission to the inquiry, that the government’s decision to omit millions of disabled people from the “clinically extremely vulnerable” list left many of them “feeling anxious and unsupported”.

The lengthy delay in producing guidance for those on direct payments left disabled people “feeling extremely anxious about the steps they need to take, should they or their personal assistants become ill”, said DR UK.

And it said that the government’s emergency Coronavirus Act, “rather than introducing measures to provide increased support and protection to disabled adults and children, did the opposite”.

DR UK was also critical of the major supermarkets, for their “completely unacceptable” refusal to speak directly to disability organisations about the problems many disabled people were having in securing food.

DR UK also pointed to failings in accessible information, employment support, benefits, and higher education, and the failure to provide parents with the support and reasonable adjustments they need to educate their disabled children at home.

And it was critical of the government’s “single focus” on the NHS, telling the committee: “Whilst we applaud the amazing work of the NHS, both for the care it provides and for the way it has increased critical care capacity, we feel that the government should have adopted a more joined-up approach across health and social care from the outset, treating them as equal partners.

“Social care should have been given parity in terms of priority and investment, to support and protect disabled people and those with serious health conditions.

“Three and a half weeks after lockdown, a social care action plan was produced.

“Unfortunately, this was after many people in care homes had died.”

In its submission to the inquiry, WinVisible said the reality for disabled women was that measures being taken against coronavirus were “threatening our lives through starvation, denial of medical treatment and lack of social care daily living support”.

WinVisible said the controversial NICE guidance and the pressure to accept DNARs were reminiscent of Nazi Germany’s eugenics policies, which branded disabled people “useless eaters”.

And it raised concerns about guidance issued by NHS England last month (see separate story) which only allows a visitor to accompany a patient into hospital in four situations: if they are in labour; if they are receiving end-of-life care; if they are visiting their child; or if they are experiencing significant mental distress.

WinVisible pointed to one disabled woman who said: “If PAs and carers are not allowed to be with me, my life would be at immediate risk as I need experienced and appropriately skilled support with ongoing respiratory physio, operating various prescribed specialist equipment, assistance with personal care, and even to call a nurse as I am unable to press a call button.”

It also pointed to problems with securing food and groceries.

One disabled woman was unable to book a supermarket delivery slot or stand in a queue, and had to cancel her home help because they did not have the correct PPE.

When she cancelled her support, council staff initially told her she would still be charged for the service.

WinVisible also praised Hammersmith and Fulham council and called for other local authorities to follow its example.

But it warned: “Disabled people, family carers and others lobbied against the Coronavirus Act’s suspension of Care Act duties; and against denial of medical treatment; and told MPs that many people could die as a result of these policies.

“We fear that after the lockdown, many people will be found dead in their homes from lack of food/water and care.”

*Links to sources of information and support during the coronavirus pandemic include the following:


Inclusion London

Disability Rights UK

The Department of Health and Social Care

National Survivor User Network

Spinal Injuries Association

COVID Mutual Aid UK

Disability North

Disability Wales

Citizens Advice

Inclusion Scotland

7 May 2020


Errol Graham: Legal challenge exposes years of DWP dishonesty and broken promises

A new legal challenge by the family of a man who starved to death after his out-of-work disability benefits were wrongly removed has exposed years of dishonesty, failings and broken promises by the Department for Work and Pensions (DWP).

The family of Errol Graham, who died in June 2018, are seeking a judicial review of DWP’s failure – dating back more than a decade – to ensure the safety of disabled people claiming employment and support allowance (ESA).

Graham’s family, led by Alison Turner, partner of his son Lee, believe that DWP’s safeguarding policy is unlawful and puts the lives of other ESA claimants at serious risk, and has already caused the deaths of countless others.

They say the flaws in the safeguarding policy are likely to affect thousands of ESA claimants.

The case put together by solicitor Tessa Gregory and her colleagues at law firm Leigh Day, who represent the family, is built upon hours of research by Turner in the months leading up to an inquest into Graham’s death last June.

It also relies heavily on evidence collected by Disability News Service (DNS) over the last six years while researching other deaths linked to the actions of former DWP ministers and senior civil servants.

Turner says in a witness statement that the evidence shows a pattern of “failing policies and how the DWP has ignored the evidence for years”.

The family and their lawyers believe that, taken together, this evidence should secure a judicial review that could force DWP – finally – to overhaul its safeguarding policy.

Errol Graham weighed just four-and-a-half stone when his body was found by bailiffs who had knocked down his front door to evict him. He had just a couple of out-of-date tins of tuna left in his flat.

DWP had stopped his ESA months earlier after making two unsuccessful visits to his home to ask why he had not attended a face-to-face work capability assessment.

Civil servants had failed to seek further medical evidence from his GP, just as in many other cases that have sparked repeated calls for an independent inquiry into links between DWP and the deaths of claimants.

The inquest heard last June that it was standard DWP procedure to go ahead with stopping the benefits of a claimant marked on the system as “vulnerable” after two failed safeguarding visits.

In her own witness statement, Gregory points to evidence unearthed by DNS into the deaths of Stephen Carré in 2010 and Michael O’Sullivan in 2013, both of which led to coroners calling on DWP to make urgent changes to their ESA safeguarding procedures, which ministers and civil servants ignored.

She also highlights the death of Jodey Whiting in February 2017, which led to renewed calls for an independent inquiry into benefit-related deaths that was backed by families of those who have died and grassroots groups of disabled activists, as well as DNS.

Gregory says the death of Jodey Whiting showed, again, “how claimants have lost their lives in circumstances when their benefits have been discontinued and steps have not been taken to protect them”.

Gregory’s witness statement also draws heavily on research by DNS into the secret peer reviews – later renamed internal process reviews – that DWP has carried out for years into benefit-related deaths, but has failed to share with the families of those who have died while also failing to monitor what happened to their recommendations.

Turner says in a witness statement for the new legal action that it was clear from years of paperwork that DWP knew of the severity of Errol Graham’s mental distress.

She says: “Errol so easily fell through the system and if that was the system then it was clear others were also at risk.”

Turner also describes in her statement how DWP breached promises it made at the inquest that it would overhaul its safeguarding policies following a review that it said would report last autumn.

The evidence submitted by Errol Graham’s family includes a freedom of information (FoI) response which shows that DWP misled the inquest about the safeguarding review.

DWP admitted to DNS in its FoI response that no revised policy or guidance was produced last autumn, and no report.

Turner says in her statement that she felt “really sick” when passed this information by DNS, and she adds: “I trusted the DWP when it said that things were going to change.

“It makes us feel like Errol’s life didn’t matter.”

Turner also reveals that her family experienced “overwhelming” stress, anger and hurt after the publication of a National Audit Office report in February which showed DWP had failed for years to address the serious flaws at the heart of its safeguarding system.

She says: “We lost Errol in one of the worst ways ever and this has left a painful scar.

“It took a lot for me and Lee to go public with Errol’s story as it is still very painful.

“What we have learned since going public, has felt like losing Errol all over again.”

She adds: “We cannot sit back while the DWP do nothing to learn the lessons from Errol’s death.

“The system needs to be challenged and changed to stop others from suffering in the same way Errol and our family have.

“We thought the inquest would result in the changes needed but that hasn’t happened and the DWP have broken their promises.”

A DWP spokesperson said: “Our sympathies are with Mr Graham’s family. It would be inappropriate to comment further at this time.”

7 May 2020


Coronavirus: NHS faces legal action over ‘unsafe and discriminatory’ visitor policy

A disabled woman with high support needs has launched a legal action against NHS England, after it refused to update its policy on visitors that would prevent her being accompanied into hospital if she became ill with coronavirus.

Fleur Perry says that NHS England’s current guidance on visitors during the coronavirus crisis puts her at risk of serious harm, discriminates against her, and breaches her human rights, including her right to life.

The guidance only allows a visitor to accompany a patient into hospital in four situations: if they are in labour; if they are receiving end-of-life care; if they are visiting their child; or if they are experiencing significant mental distress.

But the guidance (PDF), issued by NHS England last month, does not allow a personal assistant or family carer to accompany a disabled person with other physical or communication support needs, even if they have been trained to meet those needs.

Perry, who has spinal muscular atrophy and receives 24-hour care when at home, says nurses would be unaware of her support needs if she was admitted to hospital, such as how to move her in a safe way; safe dosages of medication; and her medical history.

Perry said: “I’ve been in situations where NHS staff were unaware how to safely meet my health needs; but there’s always been someone there with me to make sure I’m not dropped on the floor, I’m not injured, I’m not forgotten, and I’m not overdosed on routine medication.

“Most NHS staff are not trained in how to use my equipment or how to safely move me.

“In an emergency situation, I would not be able to train every nurse I met on how to do my care, and it’s not fair to be asking nurses to do a job they’re not trained to do safely.

“I would not be safe.”

She believes the current guidance is a breach of both the Equality Act and the Human Rights Act.

And her solicitor has warned NHS England that she will seek a judicial review of its existing guidance – seeking a legal declaration that it is currently unlawful – if it fails to amend it “as a matter of urgency”.

Perry wrote to NHS England last month about the policy but sought legal advice when it refused to engage meaningfully with her over her concerns.

Her solicitor Chris Fry, from Fry Law, says in a letter to NHS England: “If Ms Perry is unwell with a respiratory infection, she finds it difficult and exhausting to speak.

“In a hospital environment, Ms Perry would not be able to talk an unfamiliar nurse through her care if she had a respiratory infection.”

Fry Law believes that thousands of disabled people could be affected by the current NHS England policy on COVID-19 visitors.

In a blog on her legal action, Perry says: “Yes, I know there’s a pandemic on. And that makes this even more important.

“At a time when the NHS is having to work harder, better, faster than ever, removing those who support NHS staff is a no.

“Asking nurses to do a job they’re not trained to do is a no.

“Making disabled people frightened to go get treatment until they have no choice is a no.

“Putting disabled people at risk of harm which will require further treatment is a no.

“At any time, anywhere, ignoring anyone’s Human Rights is a No.

“This can be fixed. Two lines of text added to this visitor policy would do it. I’d even be happy to help them write it.”

NHS England had failed to comment by noon today (Thursday).

*Links to sources of information and support during the coronavirus pandemic include the following:


Inclusion London

Disability Rights UK

The Department of Health and Social Care

National Survivor User Network

Spinal Injuries Association

COVID Mutual Aid UK

Disability North

Disability Wales

Citizens Advice

Inclusion Scotland

7 May 2020


Coronavirus: CQC faces legal action over decision to halt most inspections

Disabled people’s organisations and charities have sent a legal letter to the care watchdog warning that its decision to halt its regular programme of inspections has put many disabled and older people at “heightened risk” of harm.

They say that service-users are already at greater risk of exploitation, violence, abuse, inappropriate medication, restraint and seclusion during the pandemic because they cannot receive visits from family, friends and advocates.

And they say the Care Quality Commission (CQC) decision means the watchdog is unable to fulfil its core aim of preventing torture and other inhuman or degrading treatment or punishment.

They also point out that the UN special rapporteur on the rights of persons with disabilities, Catalina Devandas Aguilar, said in March that limiting contact with visitors such as family and friends during the pandemic risks leaving patients and residents “totally unprotected from any form of abuse or neglect in institutions”.

CQC announced it was halting regular inspections on 16 March, except for “in a very small number of cases” where there were “concerns of harm, such as allegations of abuse”.

The 11 organisations that have sent the letter say the decision by CQC has caused it to breach its duties under the Human Rights Act, the Equality Act and the Health and Social Care Act, and leaves the UK in breach of both the UN Convention against Torture and the UN Convention on the Rights of Persons with Disabilities.

The organisations taking the action include the Reclaiming Our Futures Alliance, Inclusion London, People First (Self Advocacy), Bristol Reclaiming Independent Living, Respond, Learning Disability England and Rightful Lives.

Among their suggestions for how CQC could improve the safety of residents of care homes, they say it could prioritise inspections of services where people are most at risk, such as those 2,500-plus care homes already rated “inadequate” or “requires improvement”.

It could also provide training on social distancing and secure personal protective equipment for its inspectors.

And they say the watchdog could ask care homes and hospitals to explain how they are helping residents and patients to stay in contact with family members.

The letter – which was copied to Matt Hancock, the health and social care secretary – was sent on behalf of the 11 organisations by Merry Varney and Beatrice Morgan at solicitors Leigh Day, who are working with barrister Oliver Lewis at Doughty Street chambers on a pro bono basis.

The 11 organisations say they will consider taking legal action if CQC fails to provide a satisfactory response to their letter by 5pm on Monday (11 May).

But CQC appeared yesterday (Wednesday) to dismiss the concerns laid out in the letter.

Ian Trenholm, its chief executive, told Disability News Service (DNS) that its regulatory role of keeping people safe had not changed and that it was still using its powers to “inspect and respond to whistleblowing concerns”.

He said: “We expect services to continue to do everything in their power to keep people safe and we will continue to inspect where we see evidence of risk of harm, deliberate abuse, systematic neglect or a significant breakdown in leadership.

“We will use our powers, or work with the relevant system partners, to take action against those responsible where we find unsafe or poor care.”

A CQC spokesperson had declined to say by noon today whether Trenholm’s statement meant the watchdog would not be making any changes to its policy in response to the letter.

The grassroots disabled people’s organisation Bristol Reclaiming Independent Living (BRIL) said it was “very disappointed by the dismissive initial response” to DNS and hoped the watchdog would issue a more detailed response to their legal team and engage with the concerns raised and take action”.

BRIL warned that the CQC’s halt on inspections was “a scandal waiting to happen”.

Mark Williams, from BRIL, said: “Although BRIL understands how much pressure the CQC and adult care departments are under, we have major concerns over the lack of inspections.

“It’s only 10 years since Winterbourne View and reports have only just been published on Whorlton Hall. It would be so easy to have another crisis in care.”

Caroline Miles, a BRIL member, said: “The inspections are being stopped at the same time that any external visiting is also being stopped, so there is no external scrutiny at all.

“The placing of sole responsibility of reporting problems on whistleblowers is immensely worrying.”

A BRIL spokesperson added: “Things will be missed, at a time when people’s human rights are more at risk than ever.

“Disabled people, older people and mental health service users/survivors are already facing reduced support under ‘emergency legislation’.

“The government’s response to coronavirus is putting people more at risk of harm, abuse and detention.

“People need more support, services need more attention and greater care, not less.”

Andrew Lee, director of People First said he was angry that CQC appeared to have brushed aside their concerns.

He said: “This statement is not good enough. Isolation is having a major impact on people with learning difficulties.

“Brushing aside our worries and concerns like they don’t matter is not what we would expect.

“Ian Trenholm has a responsibility to do better. We need an explanation of why they refuse to change their policy.”

He said he wanted CQC to explain the reasons for the decision in great detail, and added: “His approach comes from experience of talking to others about us rather than talking to us about our lived experiences.

“Have they not learnt the lessons from Winterbourne View and Whorlton Hall?”

*Links to sources of information and support during the coronavirus pandemic include the following:


Inclusion London

Disability Rights UK

The Department of Health and Social Care

National Survivor User Network

Spinal Injuries Association

COVID Mutual Aid UK

Disability North

Disability Wales

Citizens Advice

Inclusion Scotland

7 May 2020


Minister criticised by government ‘disability champion’ over third access exemption

The government has been criticised by one of its own “disability champions” after it granted the transport industry its third temporary exemption from access laws, so it could continue to use inaccessible vehicles for rail replacement services.

In December, it emerged that the government was allowing the industry to continue to use older buses and coaches for rail replacement purposes even if they did not comply with the Public Service Vehicle Accessibility Regulations (PSVAR) 2000.

This exemption was granted until the end of January, a month past the legal PSVAR deadline of 31 December 2019.

Accessible transport experts had criticised the industry for failing to prepare for the PSVAR deadline, despite having 20 years to do so.

Transport minister Chris Heaton-Harris then offered train operating companies an extension of three more months, which ran until 30 April 2020, because they were still not able to source enough accessible vehicles for their rail replacement services.

But Heaton-Harris has now granted the industry yet another extension, this time until the end of 2020, even though many accessible vehicles are lying unused because of the coronavirus crisis.

In a letter to the rail industry, Heaton-Harris calls on it to be “more ambitious” with its efforts to achieve compliance but says the issue is “not one the rail industry can resolve on its own”.

He says that rail companies will still have to provide “alternative accessible transport [such as taxis] for disabled passengers which offers the same levels of service as those for non-disabled passengers” if they have to take advantage of the exemption.

But Stephen Brookes, the minister for disabled people’s rail sector champion, told Disability News Service that he was “most deeply disappointed that the bus and rail transport industry has asked for and been granted” permission to continue using inaccessible rail replacement vehicles until the end of the year.

He said: “The transport sector has failed disabled people for many years, particularly in terms of rail replacement.”

Although he said the accessibility of many coaches was still “a major barrier” to many disabled people, “the newer style of bus” had proved to be fully accessible and comfortable, with “ramps and in many cases two wheelchair spaces, as well as USB, audio, scrolling destination screens and also video signage”.

The concerns were first highlighted last year by disabled campaigner Doug Paulley, who forced the rail regulator to take legal advice on whether rail replacement vehicles had to be accessible to disabled people.

That advice stated that, with a few minor exceptions, all rail replacement vehicles must be accessible, and the train companies, and their bus or coach providers, were at risk of criminal prosecution if they were not.

The industry then faced the deadline of 31 December 2019 to stop using older vehicles that did not comply with PSVAR.

This led to the government being forced to issue its series of exemptions when the transport industry could not meet the deadline.

Paulley said the latest extension was “a bit of a disgrace”, with some transport providers apparently “still not putting much effort in” to ensuring they use accessible rail replacement vehicles.

He said: “It seems particularly unnecessary given the COVID restrictions, because all over the country there are coaches and buses lying unused.

“There would appear to be little problem with finding sufficient accessible vehicles.”

He added: “The rail industry seems to think accessible taxis are an acceptable alternative, whereas we know they aren’t*.

“This is now 16 months after my legal action forced the industry to realise that the regulations do take effect, never mind 20 years since the [PSVAR] regulations started to take effect.

“It’s ridiculous, really.”

A Department for Transport spokesperson refused to explain how the minister justified granting the latest extension when the industry had had two decades to prepare for the PSVAR deadline.

*Paulley has previously stated: “Alternative accessible transport in the form of accessible taxis appears an attractive alternative but isn’t. They aren’t spontaneous, reliable, comfortable or sometimes even safe, and their segregated provision is problematic.”

7 May 2020


Coronavirus: MPs and peers ask PM for a ‘disability inclusive’ response to pandemic

At least 10 disabled MPs and peers have signed a letter calling on the prime minister to ensure that the government improves its support for disabled people in its response to the coronavirus pandemic.

The letter, sent to Boris Johnson by the all-party parliamentary group for disability and signed by 100 MPs and peers, calls for a “disability inclusive” response to the crisis.

It warns Johnson that disabled people are “disproportionately at higher risk from COVID-19 and its long term social and economic consequences”, yet the government’s existing emergency responses to the pandemic have failed to prioritise them.

It says the inequalities faced by disabled people have been “exacerbated” during the crisis, while their rights and protections are being “weakened”.

It points to key areas where disabled people’s rights are at risk, including the right to healthcare, the right to social care and support, and the right to information.

Among the concerns raised in the letter is the impact of the government’s emergency Coronavirus Act, which allows the suspension of some of the duties of local authorities contained within the Care Act.

The letter demands information on how disabled people can challenge decisions to cut or remove their support that are taken as a result of the suspension of these duties.

It also highlights the government’s failure to ensure there is a British Sign Language interpreter at its daily televised briefings.

It calls on the government to “re-evaluate” its pandemic strategy to ensure that disabled people can secure the groceries, medication and care and support they need.

And it says the government must “accelerate” efforts to include disabled people in its economic recovery plan.

It warns: “We cannot allow the disability-employment gap or the treatment of disabled people in the workplace to worsen as a result of this pandemic, and the Government must address this issue by undertaking an impact assessment of the recovery plan based upon equalities principles.”

The letter warns that what the government does now to “support, include and enable” disabled people “will have significant socio-economic and equality implications for years to come”

The letter has been signed by 100 cross-party parliamentarians, including the crossbench disabled peers Baroness [Jane] Campbell, Baroness [Tanni] Grey-Thompson, Lord [Colin] Low and Baroness Masham, Labour’s disabled former home secretary Lord [David] Blunkett and the disabled Liberal Democrat peers Baroness [Sal] Brinton, Baroness [Celia] Thomas and Lord Addington.

It has also been signed by two disabled Tories, former transport minister Paul Maynard and Lord [Kevin] Shinkwin.

Fazilet Hadi, policy lead at Disability Rights UK, said: “It’s great to see this well supported parliamentary initiative and it would be good to have even more signatures on the letter.

“We’d urge government to respond quickly and positively.

“Whilst the commitment to a longer-term Disability Strategy is welcome, let’s develop a strategy now, for the situation we’re in.”

*Links to sources of information and support during the coronavirus pandemic include the following:


Inclusion London

Disability Rights UK

The Department of Health and Social Care

National Survivor User Network

Spinal Injuries Association

COVID Mutual Aid UK

Disability North

Disability Wales

Citizens Advice

Inclusion Scotland

7 May 2020


Coronavirus round-up: NSUN grants, BSL, education, Access to Work… and supermarkets 

A new fund is offering grants to user-led and community groups in England that are providing support to people in mental distress during the coronavirus crisis.

The fund is being run by the National Survivor User Network (NSUN), and offers grants of up to £1,000 for groups working to provide peer support, community action, mutual aid and “other activities that will make a direct difference” to the lives of people living with mental distress during the pandemic.

The NSUN fund is part of the larger Coronavirus Mental Health Response Fund, which was set up with £5 million funding from the Department of Health and Social Care and is providing grants of up to £50,000 to larger organisations for projects lasting up to 12 months.

Akiko Hart, NSUN’s chief executive, said: “We are pleased to launch this vital fund to support the user led organisations and unconstituted community groups who play such a key role in supporting the mental health of their members, but might not be eligible for grants from other funds.

“Designed to be complementary to the main Coronavirus Mental Health Response Fund, the grants will help groups to move online, ensuring that these vital lifelines are maintained at a time when other forms of support are being reduced.”

Examples of ways the funding could be used include: paying for an annual Zoom subscription so a peer support group can move online; buying a new laptop so an advocacy group can continue its support activities; or funding a mutual aid group to set up a website to share its services, or to pay petrol costs to deliver food to people with mental distress and other health conditions who are self-isolating.

The House of Commons petitions committee has called on the government to revise its response to a parliamentary petition – signed so far by nearly 20,000 people – that is demanding British Sign Language (BSL) interpreters be provided for televised emergency announcements.

Catherine McKinnell, the Labour chair of the committee, said the government’s response failed to “adequately address” the request made by the petition.

She called for the government to provide a detailed explanation of why it has refused to provide its own BSL interpretation for daily ministerial coronavirus briefings.

Last week, Disability News Service (DNS) revealed that more than 150 Deaf people – a figure which has now reached nearly 300 – had begun a legal class action against the UK government over its failure to provide a BSL interpreter at the televised briefings.

Meanwhile, the Equality and Human Rights Commission (EHRC) has written to the prime minister, Boris Johnson, asking him to reconsider his refusal to provide BSL interpretation at its daily briefings.

Rebecca Hilsenrath, EHRC’s chief executive, told Johnson in the letter that there were more than 80,000 Deaf people in the UK whose first language was BSL, and that providing an interpreter was “essential for them to understand the information being provided”.

She said the failure to provide BSL interpretation was “a particular concern given the importance of these briefings, and the potentially significant health or even criminal implications if the information is unclear or misunderstood”.

She told Johnson: “Including a BSL interpreter live at your daily briefings would allow you to demonstrate your commitment to equality for all, meeting your obligations to make reasonable adjustments under the Equality Act 2010.”

The government has announced it is weakening the duties of local authorities and health bodies to meet the needs of disabled young people with education, health and care (EHC) plans.

The announcement – which will apply throughout May – means they will only have to make “reasonable endeavours” to meet the support provision detailed in individual EHC plans.

It was issued under the emergency Coronavirus Act and temporarily changes section 42 of the Children and Families Act 2014.

The Department for Education said that local authorities and health bodies must now “consider for each child and young person with an EHC plan what they can reasonably provide in the circumstances during the notice period”, rather than having to fulfil all of that plan.

Fazilet Hadi, policy manager at Disability Rights UK, said: “This weakening of responsibilities to meet the needs of children and young people with EHC plans, puts pupils and students at even greater disadvantage.

“How can this be justified by the coronavirus crisis?

“Whilst support may have to be adapted, young people with additional needs should have more support not less.”

The disabled people’s organisation Inclusion London has written to the minister for disabled people to urge him to fix problems with the Access to Work (AtW) system.

In the letter to Justin Tomlinson, Inclusion London says it is concerned about the way the Department for Work and Pensions (DWP) is running the disability employment scheme during the coronavirus pandemic.

Among its concerns are: a lack of information about temporary changes DWP says it has made to the scheme; a lack of response from DWP when AtW recipients contact the department with questions or concerns; and a lack of information about recipients’ options for managing their support workers during the pandemic.

The consumer rights organisation Which? says it is hearing from a “worrying” number of disabled people who are struggling to access food and other basic supplies.

Which? called this week for a “more coordinated approach” and “much simpler and clearer communication” so people know how to obtain the food they need.

Among those they have heard from are people being forced to stay up until the early hours of the morning to secure a supermarket home delivery slot; those who should be shielding from the virus at home but have been forced to go to a supermarket because of a lack of support; and people with serious health conditions who are unable to secure help from governments or supermarkets.

Last month, DNS revealed that more than 200 disabled people had joined a class action against UK supermarkets over allegations that they have discriminated against them during the coronavirus crisis.

*Links to sources of information and support during the coronavirus pandemic include the following:


Inclusion London

Disability Rights UK

The Department of Health and Social Care

National Survivor User Network

Spinal Injuries Association

COVID Mutual Aid UK

Disability North

Disability Wales

Citizens Advice

Inclusion Scotland

7 May 2020


News provided by John Pring at www.disabilitynewsservice.com