Disability Rights UK Newsletter

Disabled people’s lives ‘devastated’ by Covid – BBC Survey

Thousands of D/deaf and Disabled people became more disabled during the pandemic with most losing access to vital medical appointments and necessary routines.

A BBC survey of over 3,000 people found that many Disabled people experienced a ‘huge physical and mental decline’ during the pandemic.

Young people with autism reported attempting suicide because they could not cope with drastic changes to their lives. Isolation, loneliness and support networks and cuts to care were also frequently mentioned.

DR UK’s Fazilet Hadi said: “The BBC’s survey chimes with what Disabled people have been telling us for the past 15 months. We have been loud and clear in our communications with Government that Disabled people were bearing the brunt of Coronavirus, with six in ten deaths being those of Disabled people, with people with learning disabilities needing to be much higher up the vaccine priority agenda because of increased risk, with the added dangers to those living in residential care homes, with people struggling to get hold of food and medicine for several months, with conditions missed off the shielding list, with the deterioration of physical and mental health as medical, exercise and social facilities and support were closed down – every area of our lives took a nosedive, and Ministers failed or delayed speaking with us at every step. The BBC data paints a clear picture of the systemic failure of Government to prioritise the lives of Disabled people despite clear evidence that prioritisation was absolutely necessary.

”The pandemic amplified the systemic discrimination and inequality that is the everyday experience of millions of Disabled people.

It is vital that the Government’s soon to be published National Disability Strategy is more than a set of incremental departmental objectives. It needs to respond to the deep inequalities that COVID has laid bare, setting out bold radical steps towards building a disability inclusive society.”

Read more here.

Senior Minister responds to DR UK Covid concerns 11 months later

The Minister for Social Care, Helen Whately, has taken eleven months to respond on behalf of the Prime Minister, to the concerns raised about the treatment of Disabled people during the coronavirus crisis, made by Disability Rights UK’s Our Voices group.

Our Voices – a consortium of Disabled People’s Organisations from across England, wrote to the Prime Minister last July, to ask for action on a vast array of issues arising from the pandemic which were deeply affecting, and risking, the lives of Disabled people.

Apologising for the delay, the Minister said in her letter: “I recognise how challenging a time this is for disabled people, especially because of the serious risks that COVID-19 poses to people with some specific health conditions and because of social distancing and disruption to routines. I completely agree that Government departments must work together so that disabled adults, children and their families can get the right support to stay safe and healthy…

“Despite the unprecedented challenge we face as a nation, this Government is committed to delivering an ambitious National Strategy for Disabled People, with expert advice and the lived experience of disabled people at its heart. We intend to publish the Strategy soon.

“I hope this reply is helpful.”

DR UK’s CEO, Kamran Mallick, said: “On the one hand Government says it is committed to an ambitious Strategy, but on the other hand, its track record of prioritising Disabled people’s lives during the pandemic has been incredibly poor. There is a huge dissonance between what the Government says at the moment and what it does when it comes to deeply understanding the needs of Disabled people and taking strong action to make sure they are addressed. The pandemic shone a spotlight on decades of neglect of Disabled people. It heightened the poverty we live in, financially, medically and socially. A response eleven months after we raised vital concerns is abysmal .”

100 Disabled families given three months to find specialist residential placements

Around 100 families in Sussex have been told they have to rehouse Disabled loved ones within just three months after care home provider Sussex Healthcare announced it is closing six residential homes.

Sussex Healthcare, the largest provider of residential care for people with severe learning disabilities in the county, is closing all of its homes for people with learning disabilities.

Families told BBC South East News that their loved ones would struggle to cope with such rapid change, even if they could find suitable accommodation in such a short space of time. They are petitioning Sussex Healthcare to try to sell that part of its business to another company rather than closing it down.

Sussex Healthcare told the BBC it has taken the “difficult” decision because it cannot keep up with CQC requirements.

DR UK’s Fazilet Hadi said: “This move shows a callous lack of understanding of the needs of people with learning disabilities. Familiarity and routine are essential for many people with learning disabilities. Providers closing residential care should work with local authorities to ensure that alternative provisions are made, with adequate timescales and in the local area to avoid families having to move loved ones to completely different areas of the country. The implications of rapid change for residents in situations like this are life shattering.”

Homeless Disabled woman ‘dumped in hotel’

A homeless Disabled woman has been “dumped” and “left to rot” in a hotel for weeks after her local council deemed her flat to be a fire hazard.

Emma Davies told the Liverpool Echo newspaper that she was “dumped” in a hotel by Sefton Council, where the “police turn up every day”.

“My flat was a fire hazard so I had no choice. There is constant screaming and swearing, the police are here every other day… I’m living off cheap pasties, and that is when I can actually get out, which isn’t often.”

Another resident of the Prince of Wales Hotel, Roy Brady, says he lost his home through no fault of his own and says he may need one or both of his legs amputated. He told the paper: “We just get passed from pillar to post, we are overlooked because of our disabilities,” he said.

“We aren’t getting fed properly. I have no cooking facilities and I struggle to get out to get food. I’ve had one hot meal in four weeks. We’re treated worse than dogs.”

Roy told the paper he finds it hard to go to shops in his wheelchair and said it was “inhumane” that he has nowhere to do laundry.

“I’m having to eat dry bread and make a loaf last me,” he said

“And now they’re telling us we’re being shipped out, but we don’t know where to.”

A Sefton Council spokesperson said: “The Sefton Housing Options team has been supporting Mr Brady as a priority case and had provided him with temporary accommodation in Southport while seeking out options for suitable long-term accommodation.

“As the current temporary accommodation arrangement comes to an end at the end of the month, alternative temporary accommodation in the Southport area has already been sourced.

“Sefton Housing Options has been and continues to be in regular contact with Mr Brady and has not been made aware of any concerns around food provision.

“Similarly, our colleagues at Light for Life, a commissioned service from Sefton Council supporting homeless people in the Borough, have also been in regular contact, sometimes daily, providing food on at least four occasions.”

Fazilet Hadi, DR UK’s Head of Policy, said ”Councils across the country are failing to meet the housing needs of Disabled residents. The stock of accessible homes and homes suitable for wheelchair users is completely insufficient.

“Councils need to do far more to understand and quantify the housing needs of their populations and ensure that housing stock is fit for growing numbers of Disabled residents.”

Learning disability nursing in crisis

Just 22 new people have joined the ranks of specialist learning disability nurses according to a new Royal College of Nursing (RCN) report in the past three years. A record low of 3,192 learning disability nurses was recorded in 2018.

The report warns of a staffing crisis across nursing which could affect safety, with learning disability nursing representing a significantly at-risk sector.

The report says that ignoring the role of learning disability nurses is “discrimination by proxy.”

Report author Jonathan Beebee said: “It’s scandalous that in this day and age people with learning disabilities are still dying on average 25 years sooner than the general population. Specialist care can transform their lives.

“Investment is much needed to encourage people to train as a nurse and take the career path into learning disability nursing.”

DR UK’s Head of Policy Fazilet Hadi said “The tiny number of new learning disability nurses is truly horrifying. Every year in the Learning Disability Mortality Review we hear about the continuing failure to provide adequate health care to people with learning disabilities, but this report on staffing levels shows that there is little connection between describing the problem and doing something about it.

“The NHS needs to take immediate and radical action to increase this vital part of its work force.”

DWP may have unlawfully deprived benefit arrears from tens of thousands of PIP claimants

The DWP may have acted unlawfully after potentially depriving tens of thousands of benefit claimants of thousands of pounds each in back-payments, according to a legal opinion given to Benefits and Work.

After taking legal advice from a leading social security barrister, Benefits and Work wants to hear from claimants who may have been affected to help with a potential legal action.

The call relates to a high court ruling in December 2017 (known as “MH”) that found DWP had acted unlawfully by introducing new rules that were “blatantly discriminatory”.

Benefits and Work explains:

“Claimants should have been awarded the standard rate of PIP mobility if, because of “overwhelming psychological distress”, they needed someone with them to follow the route of an unfamiliar journey or if they could not undertake a journey at all.

And they should have been awarded the enhanced rate if they could not follow the route of a familiar journey without having someone with them for the same reason.

Instead the DWP had been awarding just 4 points, not enough for any award of the mobility component at all.”

Benefits and Work wants to hear from PIP claimants who have received a letter from DWP about the review in the last three months to tell them their PIP award has not changed as a result of the trawl. Read more here.

Grenfell chief failed to alert residents to serious fire risks

Robert Black, the former head of Grenfell Tower’s management body, repeatedly failed to make residents and Kensington and Chelsea councillors aware of serious fire safety issues.

Giving evidence to the ongoing Inquiry into the Grenfell Tower fire in which 72 people died, he admitted to “keeping the board in the dark”.

Robert Black was aware of serious issues with smoke extractors at Grenfell, a deficiency notice issued by the London Fire Brigade regarding the tower, and problems with fire doors at another residential block which had been affected by fire.

A safety management review commissioned by Black in 2013 identified “a lack of leadership at executive level”. It found over 1,000 outstanding fire risk assessment actions necessary to keep residents safe. Black didn’t tell a management board meeting about any of these risks.

Richard Millett QC told Black: “You were keeping the board in the dark.” Black responded: “I wouldn’t do that.” “Well, you did,” said Millett. Black replied: “I accept that.”

Cross examination of Black took place last week a day after he blamed other staff for allowing Grenfell’s fire safety plan to lapse out of date for 15 years, and fail to account for over 24 Disabled residents in the tower.

Long Covid ‘a disability’ says TUC

Long Covid should be classed as a disability to protect thousands who need protection from workplace discrimination, says the TUC.

A survey of 3,500 people with Long Covid commissioned by the TUC shows that over half of those with Long Covid symptoms, including energy impairment, brain fog and breathlessness have been discriminated against or disadvantaged at work, with managers questioning the legitimacy of a fifth’s claims that their condition impacted their health, and almost a sixth being completely disbelieved.

Employees in need of time off for Long Covid risked sanction, with around one in six workers subjected to HR processes. A tenth of people were threatened with negative consequences for time off, and one in 20 were forced out of their jobs.

Almost 80% of those affected are keyworkers in frontline jobs where their exposure to the virus would have been higher. A third of those surveyed had symptoms over a year after contracting the virus.

Frances O’Grady, Head of the TUC, said that people with Long Covid must be protected by the Equality Act, and have a right to reasonable adjustments at work, such as flexible working, longer rest breaks, and specialist software or equipment to do their jobs. She also called for it to be designated as an occupational disease so that workers could get the necessary compensation.

ONS statistics show that 376,000 people in the UK have reported symptoms lasting for over a year, with women in mid-life, health and social care workers, and people with other activity limiting conditions being most affected.

DR UK’s Head of Policy, Fazilet Hadi, said ”This TUC report is hugely welcomed. Those with long COVID and other chronic health conditions need to know that they have rights and protections under the Equality Act, particularly the right to reasonable adjustments from their employer.

“So often people with chronic health conditions don’t receive the reasonable adjustments they need. Over this past year, remote working has proved effective for millions of workers and this added flexibility could make the difference in enabling many with energy limiting impairments to maintain employment.”

BBC appoints new disability team

The BBC has set up a new disability team, to include Cbeebies presenter Cerrie Burnell in the role of Disability Ambassador, Kay  Ashton MBE as Creative Diversity Disability Lead, and Nichola Garde as Project Manager of Elevate, a recruitment programme for Disabled people.

Cerrie Burnell will work closely with commissioning and production teams over the next year to champion authentic on-screen portrayal of disability. She said: “I’m beyond excited to be working with the BBC to elevate disability narratives, so they become integral to all storytelling and ground-breaking content in a deeply authentic and enlightening way.”

The new team will be part of the BBC’s Creative Diversity Unit, led by June Sarpong. The BBC’s 50:20:12 workforce targets are looking to employ 50% women (the same as the UK population percentage); at least 20% black, Asian or minority ethnic staff (seven percent higher than the UK population percentage); and at least 12% Disabled people (nine percent less than the UK population percentage) from now until 2023 as part of its current Diversity and Inclusion plan.

The team will report to the BBC’s Head of Creative Diversity to develop and deliver the BBC’s disability agenda as part of its diversity strategy.

DR UK CEO Kamran Mallick said: “Disabled people make up over a fifth of the population and yet continue to be underrepresented in our society. Our media outlets have a moral obligation to reflect and represent the diversity of our communities. For the BBC to set itself an unaspirational target of 12% of its workforce to be Disabled people is an indication of how it sees us. There is a rich diversity of talent and human potential that the BBC should bring to its operations at all levels of the business. Until our institutions are ambitious about change Disabled people will continue to be the forgotten members of our society.”

A third of people ‘at risk’ from Covid or with learning disabilities yet to be fully vaccinated

The latest NHS vaccination data shows that over 82% of those identified as being at risk or a carer aged 16-64 (a total of 7,691,413 people) have had their first Covid vaccine, with almost 64% having had both doses of the vaccine.

Of the people identified on the GP Learning Disability Register aged 16-64 (248,703 people), 84% have had one dose of the vaccine and almost 68% have had both doses.

DR UK Head of Policy Fazilet Hadi said: “It is incredible that at this stage of the vaccination programme a third of people in these at risk groups have yet to be double vaccinated. We will be writing to the Vaccines Minister to ask for answers as a matter of urgency.”

A third of young adults endure chronic pain

The amount of young adults enduring debilitating chronic pain shot up from 21% to 34% between 2011 and 2017. The condition now affects around 15.5 million people according to new analysis by Public Health England and Versus Arthritis.

Chronic pain is defined as pain that lasts for over three months.

The proportion of people aged 16 to 34 affected by high-impact chronic pain – acute pain which impacts the ability to self-care or work – rose dramatically from 21% to 34%.

The figures rose by just 2% for 35-44 year-olds and 5% for 55-64 year-olds.

The findings are based on an analysis by PHE and the charity Versus Arthritis of data about population health collected by NHS Digital for the health survey for England in 2017. It is contained in a new report by the charity, called “Unfair, unequal and unseen: chronic pain in England”.

Versus Arthritis’ Chief Executive Ellen Miller said: “It is deeply alarming to see such a significant increase in high-impact chronic pain in young adults, not seen in any other age group.” She said that life experiences such as deprivation, social exclusion, being in a marginalised group,

falling levels of physical activity, rising obesity, or adverse socioeconomic trends could all possibly impact people’s experiences of chronic pain.

Overall 5.5 million people have high-impact chronic pain in the UK, most of them being poorer, from minority ethnic backgrounds, or female.

DR UK’s Head of Policy Fazilet Hadi said: “There is a paucity of meaningful treatment for chronic pain. Our recent input into the Women’s Health Strategy consultation highlighted just how often women are gaslit and disbelieved when it comes to living with chronic pain. It is shocking that the condition has rocketed in younger demographics. Pain is too often seen as part and parcel of Disabled life, with too little research into its causes, and too little impactful support and treatment offered.”

Benefits training courses  

DR UK offers a range of essential online courses in partnership with the Benefits Training Company. Each course is run in two parts, using Zoom and facilitated by an experienced benefits trainer.

Preparing for an Appeal Tribunal 

This course is aimed at professionals who work in advice or advocacy who need to know about how to prepare an Appeal Tribunal. A working knowledge of Personal Independence Payment and the Work Capability Assessment is assumed.

Part 1: Assessing the case, reviewing the DWP decision – Thursday 6 July 9.45am – 12.45pm

Part 2: Composing effective written submissions, preparing claimants for appeal hearings – Friday 7 July 9.45am – 12.45pm

Click here for more information and to book your place.

Introduction to Welfare Benefits 

The course is aimed at professionals who work in advice or advocacy who need to know more about – or need a refresher on – changes to welfare benefits and social security.

Part 1: The structure of the system and the importance of health & disability benefits – Tuesday 20 July 9.45am – 12.45pm

Part 2: Universal Credit, the wider benefits system and maximising income – Wednesday 21 July 9.45am – 12.45pm

Click here for more information and to book your place.

These courses sell out fast so early booking is encouraged. Each course costs £112.50 + VAT per person for DR UK organisational members. After booking you will receive a Zoom link and supporting materials by email.

Social Care – sign the Statement

Organisations led by Disabled people feel that they are being excluded from current discussions being held by the Department of Health and Social Care. To address this, a Statement has been produced that sets out the principles which should underpin reform and the actions which need to be taken to ensure that reform improves the lives of Disabled people. Organisations and individuals are being asked to sign the Statement by 4 July, prior to it being shared with Government.

PEEPs petition: protecting Disabled people from fire

Disability groups are urged to respond to the Government’s consultation on Personal Emergency Evacuation Plans for Disabled residents. Disability Rights UK, Leaseholders Disability Action Group and Grenfell Next of Kin have highlighted four key areas where Government proposals need to be strengthened.

Government regulations must make it absolutely clear that the responsibility for communicating the purpose of Personal Emergency Evacuation Plans (PEEPs) to residents and explaining their vital role in the event of fire, is placed firmly on building owners and managers. The height of a building should not matter. All Disabled residents who need a Plan should have one. Personal Emergency Evacuation Plans should clearly state what is needed for a safe evacuation and the document should be provided in accessible formats. Plans should be stored securely and be regularly updated.

A sample response been drafted to make it easier for disability groups and Disabled individuals to respond.

The consultation closes on 19 July. This is the only window for people to give their views, as following the consultation, regulations will be laid before Parliament.

Joint Meeting between the APPG on Disability and APPG on Fire Safety 

Monday 12th July at 2pm

This session will be chaired by Sir David Amess MP.

The APPG on Disability is jointly hosting a meeting at 2.00pm on Monday 12th July 2021 to highlight the importance of the Government’s consultation on Personal Emergency Evacuation Plans for disabled residents unable to self-evacuate from buildings.

The meeting will cover the government’s key proposals and have input from disabled residents, as to how the proposals need to be strengthened. The consultation closes on 19 July and it is vital that the views of Disabled People are heard.

The consultation seeks views on implementing the Grenfell Tower Inquiry which recommended that building owners and managing agents are given the legal responsibility for producing and storing Personal Emergency Evacuation Plans for residents of high-rise buildings unable to self-evacuate.

RSVP to kirosinghr@parliament.uk with “RSVP” in the subject line.

Support DR UK through online shopping

Did you know that you can support DR UK’s work simply through shopping?

The Amazon Smile scheme donates to your chosen charity when you shop at Amazon using a Smile link instead of the main Amazon link.

Or shop with any of over 2,000 well known retailers (such as M&S, Vodafone, eBay, Tesco, Viking) listed on easyfundraising.org.uk and a percentage of what you spend is passed to Disability Rights UK.

Neither scheme will cost you a penny. To find out more, visit our website.

Please note that if you use the Amazon app on your phone, AmazonSmile has to be turned on.

DNACPR oversight group – have your say

The Department of Health and Social Care has launched a ‘do not attempt cardiopulmonary resuscitation’ (DNACPR) oversight group to oversee the recommendations made in the CQC report into DNACPR orders during the pandemic. DHSC is seeking feedback and will be reporting again in the Autumn on the next Ministerial Oversight Group. If you would like to get in touch or receive further updates please email lexi.cotoulas@dhsc.gov.uk.

Covid Disability Archive

The Covid Disability Archive is gathering documentation for future historians and researchers about how the pandemic has uniquely affected Disabled people. If you would like to submit experience, testimony, evidence or photos, contact Daisy Holder here.

Ageing better webinar

Ageing Better is running an inclusive design webinar focusing on home products from 10-11am on Thursday 15 July. Book your places here.

Ask, Listen, Act kids Covid survey

Liverpool John Moores University has launched a study called Ask, Listen, Act to ask children with SEND (aged 5 -15) and their parents or carers how COVID-19 has impacted them and what is important to them as we move forward.

Children can complete the questions by writing their answers, using emoijis or drawing pictures. Access the survey here.

Energy use app

The Times has developed an energy efficiency calculator. It has given the End Fuel Poverty Coalition a link which isn’t affected by its paywall. The calculator has been designed to help people save money on fuel bills. Access the calculator here.

National Survivor User Network is recruiting new Trustees

The National Survivor User Network (NSUN) has opened recruitment for up to three new Trustees, including a Treasurer, to help it strengthen its governance and shape our strategic direction.

NSUN is a network of people and groups with lived experience of mental ill-health, distress, or trauma.

NSUN is a user-led organisation. Each Trustee must have lived experience of mental ill-health, trauma, or distress. It particularly welcomes applications from people from under-represented and/or marginalised communities, including people from racialised communities, Disabled people and people under 30. You can apply here.

HCPC seeks new Council members

The Health and Care Professions Council (HCPC) is seeking to appoint two Registrant Members and one Lay Member to its Council.

The Health and Care Professions Council (HCPC) is a regulator of health and care professionals and our aim is to protect the public. To do this, we keep a register of health and psychological professionals who meet our standards for their training, professional skills, behaviour and health.

For more information, and to apply, visit: www.hcpc-uk.org/become-a-council-member/ or contact: appointments@hcpc-uk.org  or call 020 7840 9710.

DRM magazine

The latest issue of DRM magazine has a feature on our Get Yourself Active programme. Read it here.

Disability Rights Uk Helplines

Our helplines are operating as normal:

Personal Budgets Helpline

Disabled Students Helpline

Welfare Rights Helpline for Member Organisations