Disability Rights UK Newsletter

Government refuses to start public inquiry into Covid as PM accused of saying let the “bodies pile high”

The government has told the families of those who have suffered bereavement through Covid that “an inquiry now is not appropriate”.

A letter sent from the government to lawyers acting for the Covid-19 Bereaved Families for Justice group said: “the very people who would need to give evidence to an inquiry are working round the clock… it is not anticipated that the government’s workload will ease in the coming months”.

The government said it is focussing on vaccine delivery and preparing for “the effects of the third wave of the virus currently being experienced in neighbouring countries”.

It said that inquiries by committees of MPs and the National Audit Office provide the means for lessons to be learned.

Jo Goodman, co-founder of the bereavement group said that the government’s position was one of “procrastination” and “an insult to the bereaved [and] prevents the government from protecting future lives to the best of their ability”.

DR UK’s Fazilet Hadi said: “The government is failing to listen to hundreds of thousands of bereaved families. Boris Johnson has promised an inquiry but is refusing to commit to when. Disabled people make up a fifth of the population, yet 60% of deaths were those of Disabled people. The scale of loss is huge. Families cannot get any sense of closure while being left hanging by the very same government which made so many mistakes early on in this pandemic – mistakes which led to an overwhelming loss of life – 127,000 lives. 127,000 lost loved ones.”

The Prime Minister has this week been accused of, and denies saying, let “bodies pile high” in a rage. ITV journalist Robert Peston has said that two witnesses would corroborate this “under oath”.

Fazilet Hadi added: “These are astonishing accusations which will do nothing to persuade the families of those who lost loved ones that the government thought their lives mattered.”

Labour has called for an inquiry to begin as soon as lockdown measures are lifted in June, along with leading disability charities, the Royal College of Nursing the British Medical Association, the TUC and the Archbishop of Canterbury.

Disabled woman’s cause of death after routine operation was partly from neglect

A woman with learning disabilities died after a routine eye operation from causes which in part included malnutrition as a result of neglect, a coroner has ruled.

Laura Booth, who was 21, was admitted in September 2016 to the Royal Hallamshire hospital in Sheffield. She died on 19 October.

Laura’s mother, Patricia Booth, told the inquest that her daughter stopped eating shortly after she was admitted to hospital, and that doctors ignored her attempts to communicate.

She said she told the doctors: “This isn’t right, she can’t survive on no food.”

The coroner ruled that Laura “developed malnutrition due to inadequate management for her nutritional needs” and that her death “was contributed to by neglect”. Feeding charts were not started despite concerns about her nutrition from her admission onwards.

The coroner said: “I am satisfied on the balance of probabilities that had Laura received adequate nutrition during her admission, the outcome on the 19 October 2016 would have been altered.”

Kirsten Major, Chief Executive of Sheffield Teaching Hospitals NHS Foundation Trust said: “We regret what happened and we have already overhauled our nutrition service and processes so there is now a clear lead decision-maker to review and expedite actions for patients with complex nutritional needs. We are truly sorry for what happened, and we will be responding to all of the coroner’s recommendations to prevent this situation happening again.”

“Barbaric and inhumane” care is “generating trauma” for Disabled children

The Health and Social Care Committee has heard of the horrifying conditions that Disabled people live in.

Benji O’Reilly, herself an NHS worker, told the Committee that her autistic teenage daughter’s treatment in the care of the NHS was “barbaric and inhumane”. She cited examples of her daughter having to wait for 30 hours in A&E for a space in an infant ward, being kept in “a tiny box-sized, bland side-room for four weeks, with no fresh air, no exercise, no stimulation, no activities, not able to see friends, family, pets… Unsurprisingly, she had a huge meltdown and started displaying some, what is seen as, challenging behaviour”.

She said: “She has been treated like a criminal at times. She has often asked why she’s being punished.” And described how her daughter was “physically pulled away from me and restrained in front of my eyes”, having been left “screaming and crying for her mum” when the hospital cancelled a planned visit without warning.

Dr Sarah Ryan told the Committee how her son Connor died in a bath in a learning disability unit. She told the committee the only treatment he was given in nearly four months was a change in medication which led to increased seizures. She said: “We are generating traumatic experiences for people and then puzzling about why we cannot release people back into the community… There is absolutely no reason why anybody should be restrained or secluded in the 21st century for health-related reasons.”

In the same week, the Local Safeguarding Children Partnership serious case review looking into the circumstances which led to autistic teenager Jonty Bravery to throw a six year-old child from a sixth floor balcony at the Tate Modern gallery in London has highlighted the acute shortage of specialist care for children with high risk and complex behaviour.

Chair of the Committee, former Health Secretary Jeremy Hunt said the UK needed “radical change” in how it deals with people with learning disabilities and autism.

Care Minister Helen Whately said: “Everyone is calling out, myself included, for there to be more effective support in the community. We need greater clarity on what does actually work in the community, what is the right model, so we can then say to every area across the country: ‘Make sure you have this in place.'”

DR UK Head of Policy Fazilet Hadi said: “These stories are heartbreaking and shocking, and yet they are going under the radar of national consciousness. Disabled children are still being treated with the means and methods used in Victorian asylums – the stuff of horror films. But this is not grotesque fiction, it is lived experience. The Government must commit to investing money and setting timescales to end these practices which amount to torture and abuse and which haunt the lives of those who experience such dreadful treatment for a lifetime.”

Hundreds of thousands failed by lack of understanding of energy impairments – new report

Based on large scale quantitative and qualitative research, a new groundbreaking report “disrupts stereotypes and exposes the systemic failings that harm the lives of hundreds of thousands of people in the UK”.

The report is based on emancipatory disability research by the Chronic Illness Inclusion Project, part of the DRILL programme, supported by the Leeds University Business School, CERIC, LSSI, ESRC and published by the Centre for Welfare Reform.

It presents the findings and recommendations from a study into social inclusion, employment and social security for Disabled people with energy limiting chronic illness (ELCI).

People with ELCI have a range of medical diagnoses, and symptoms may vary and fluctuate, but the overall impact on their lives is of energy impairment. They have to carefully ration their energy every day in order to avoid aggravating symptoms.

Examples of ELCI include: ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), fibromyalgia, lupus, chronic pain, Ehlers Danlos syndrome, as well as conditions causing: respiratory failure, kidney failure, inflammatory bowel conditions, sickle cell disease, autoimmune conditions, neurological conditions, endocrinological conditions, and rheumatological conditions.

The new report is timely in addressing the circumstances of those 1.1m people experiencing Long Covid.

According to the new research, people with ELCI experience high levels of social isolation, stigma and lack of representation.

In its Executive Summary, the report says: “One in three disabled people of working age in the UK experiences impairment of stamina, breathing or fatigue. This is the current closest match to the concept of ELCI. Despite the size of this group, employment and social security policies and systems have not considered or been designed for the particular needs of this group of people.”

It adds that: “Until now, policy makers have identified this group through various categories of medical diagnosis, or through the catch-all term ‘long-term health conditions’. Read more here.

Low-traffic schemes overlook Disabled people’s needs

Councils do not consider the needs of Disabled people when implementing low-traffic neighbourhoods according to Disabled residents who say the schemes increase journey times and leave Disabled people no alternative but to use cars.

In a report in The Times newspaper, the mother of a child with incontinence said the increased journey times led to him arriving at school wet, distressed and confused. The local Council, Islington,  is refusing to allow the school bus to make a reasonable adjustment under the Equality Act and drive through blocks in residential roads. It says that a global ban on allowing any vehicles except emergency vehicles through camera-controlled filters makes “the environment feel much safer, and make it much more likely that local people will begin to travel more by active means”.

Edward Cripwell, of Disability Action in Islington, told The Times the charity had been “inundated with complaints by disabled people throughout the borough… People say they have been locked down and locked in by the low-traffic neighbourhoods. Nobody who has contacted the council has had a meaningful response, no hint that disabled peoples’ views are being considered and that anything will change.” He said that the council did not undertake a “comprehensive equality impact assessment, they did not consult with us formally, they presented us with this scheme as a fait accompli. It does not seem that the rights of disabled people have been taken into account as they should be, as disability is a protected characteristic under the Equality Act.”

Disabled residents in the London boroughs of Ealing, Lewisham, Waltham Forest and Greenwich have also reported concerns.

Svetlana Kotova, Director of Campaigns and Justice at Inclusion London said: “We are highly disappointed, but unsurprised, by the approach of London boroughs and the hurried development of LTNs… the lack of consultation and engagement by many London councils with disabled people and other non-disabled residents to co-produce solutions has resulted in schemes that do not work for everyone.”

Leonard Cheshire launches campaign for better use of language around disability

Disability charity Leonard Cheshire has launched a new campaign around the use of language relating to Disabled people. A list of appropriate and inappropriate terms for Disabled people suggests saying “non-disabled” rather than “able-bodied” and “person with visual impairment” instead of “blind person”.

A spokesman from Leonard Cheshire told The Daily Telegraph: “Ignorance about the correct language to use when talking to people with disabilities is rife in the UK… Nearly three quarters of disabled people – of which there are more than 14m in the UK – say more needs to be done for non-disabled people to understand that their words cause offence… We found that 46% of all disabled Brits feel regularly ‘ignored’ or ‘over-looked’ by non-disabled people due to widespread use of inappropriate or demeaning language… More than one in ten of the disabled people we asked said they were having to correct the misuse of language around disabilities a staggering 4-6 days each week.”

It also found that a third of 1,000 non-disabled people said they often worried about “saying the wrong thing” when speaking to a Disabled person.

DR UK’s Fazilet Hadi said: “Language is important. It’s time we all dropped the fear of doing or saying the wrong thing and started having honest, vulnerable conversations about why specific terms hurt and why other terms are much more empowering. The root of the issue is increasing awareness and understanding across society. We welcome this campaign’s efforts to change thinking and the words used in the national conversation about disability.”

County Council called upon to change chronic lack of accessibility

A Ramsgate man who suffered severe brain injuries in a random attack on a night out has launched a petition to ask Kent County Council to address the chronic lack of accessibility in his hometown.

Joe Shaw was injured in a brutal unprovoked attack in March 2018 and now uses a wheelchair. He has made a video showing just how hard it is to get around the popular resort town, even where there are supposed to be dropped kerbs.

The video shows that dropped kerbs often have lips which cannot be surmounted, pavements are dangerously uneven, roadworks block safe pavement access, and shops are completely inaccessible.

To help Councillors understand just how difficult it is to get around the town in a wheelchair, Joe says in the video: “I reckon that members of the Council should sit in a wheelchair for a day and be pushed around like a Disabled person and have the experience of that person.”

DR  UK’s Fazilet Hadi said: “This video comes as no surprise to anyone who has tried to use a wheelchair or mobility scooter to go about day to day life. Councils across the country make adjustments that tick boxes at best most of the time, without meaningful consultation with Disabled people, with no comprehension of how to adapt environments as per the Social Model of Disability, and more recently, they have been taking away access by cluttering up pavements and removing blue badge parking to put in place al fresco dining spaces outside cafes and restaurants. The Government has a golden opportunity to turn this desperate workaday situation around in its forthcoming National Disability Strategy. We hope it takes it up.”

London DPO calls on Mayoral candidates to commit to fair ULEZ charges

Action Disability Kensington and Chelsea (ADKC) has issued an Open Letter requesting all the London Mayoral candidates commit to providing the same reasonable adjustments for disabled people for the extended Ultra Low Emission Zone (ULEZ) as are made for the Congestion Charging Zone. Read more here.

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