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23.03.2021 weekly update

Welcome to the weekly update.  This edition includes:

1. Coalition Update

2. Social /Peer support coming up

3. Opportunity: Patient and Public Voice (PPV) partners with experience of Long COVID required – NHS England

4. Our New Hospitals Programme – Explore the latest designs for the Abraham Cowley Unit, Thursday 8th April, 10am – 12pm

5. Recruitment Call – Disabled Researchers needed!

6. Adult Social Care Briefing – March 2021

7. Disability Rights UK E Newsletter

1.  Coalition Update

Meet our newest board member! – In this 3-minute video, Luke shares a few of his hobbies and his reasons for joining the board

New Training Videos – We are developing some micro training videos aimed at those who would like some simple tips.  The first video is on how to use the mute button!  How many times have we heard the phrase ‘you’re on mute!’.  Please use this link to access our helpful guide.

Save the Date! Empowerment Training for Members – We are very pleased to be able to offer our members free empowerment training.  The training will take place online, spread over two mornings on the 14th and 15th of June.  More details will be sent out nearer the time.  Spaces are limited so please book your place now by contacting Yasmin!

Independent Mental Health Network (IMHN) report into the impact of Covid-19 – The IMHN and Surrey Minority Ethnic Forum (SMEF) have released a summary report and video, detailing the findings of some joint research into the impact of the Covid-19 pandemic on the mental health of people from Black, Asian and other minority ethnic groups in Surrey.  You can see the report in your preferred format here: summary report or watch the video here: (please go to settings and turn subtitles on). 

2. Social /Peer support coming up

Friday Virtual Café – Don’t forget to join our new virtual café tomorrow at 11.30am.

Joining link: Friday virtual cafe

Meeting ID: 869 7592 1531

Passcode: 451484

0800 260 5801 United Kingdom Toll-free

Trip to the Rural Life Living Museum – Don’t forget our Monday morning virtual café will host a trip to the Rural Life Living Museum at 11.00 am.  If you would like to join us, please use this link.

Guildford Museum part two – We are returning to Guildford Museum on Monday 12th April during our virtual café.  Our very helpful guide Melanie will take us on a tour of the second floor of the museum. 

Wisley Winter Walk – Although Spring has officially sprung, our friends at Wisley filmed a winter walk for us.  Led by Matt one of the gardeners.  Although the video is pre recorded Matt will be with us to take you on the walk and answer any questions you may have. Our special tour will take place on Wednesday 14th April at 11.30am.

3. Opportunity: Patient and Public Voice (PPV) partners with experience of Long COVID required – NHS England

Surrey Heartlands CCG are writing to you today to highlight an opportunity to become a Patient and Public Voice (PPV) partner with NHS England. NHS England are seeking PPV partners with experience of Long COVID to support the NHS England and NHS Improvement Long COVID Programme. PPV partners include patients, service users, carers, families and other members of the public who are willing to share their perspective and lived experience.

There are two levels of PPV Partners being recruited including: five PPV Partners (Role 4) to join the Long Covid Taskforce and subgroups and a wider group of PPV Partners (Role 3) to create a patient and public advisory group. Please visit the PPV Partners policy for more information on these roles.  This is a great opportunity to play a role in shaping the way services respond to the impact of Long COVID19. With  health inequalities taking a key focus in the work being undertaken, NHS England are keen to ensure the PPV Partners represent the people who face health inequalities with a strong emphasis on encouraging applications from all sections of the community.

The deadline for applications is 30th April 2021. If you require a reasonable adjustment to apply please contact Sarah Cooper 07718130562.

4.  New Mental Health Hospitals Programme

Explore the latest designs for the Abraham Cowley Unit, Thursday 8th April, 10am – 12pm

SABP know that getting the designs for the Abraham Cowley Unit (ACU) right is fundamental to ensuring that the new hospital transforms the experience of people who use services, carers, families, and staff. To help bring the designs to life, at the next Lived Experience Group event, the architects, IBI, will use a virtual 3D model to walk us through the building so you will be able to get a sense of the size and space, and see how the building could work.

Wherever possible, SABP are striving to meet the aspirations people have shared with them for the new hospital, and the session will look at how they have incorporated your feedback into the designs. There will be a particular focus on arriving, eating, and sleeping and the experience for families and carers visiting someone staying at the ACU.

Whether you’ve used SABP services in the past, are a family member or carer of someone who has, or you work for our Trust, please go along to share your ideas and challenge thinking.

For more details and to sign up for the event, please click here.

5. Recruitment Call – Disabled Researchers needed!

Shaping Our Lives are recruiting a team of freelance Disabled lay researchers.  The deadline is Friday 23rd April.  Please find out more on the website here: Disabled Lay Researchers Positions with Shaping Our Lives

6. Adult Social Care Briefing – March 2021

7. Disability Rights UK E Newsletter

News Round-up
Shielding to end from 1 April More than 3.79 million clinically extremely vulnerable people in England are to be told they are no longer advised to shield from Thursday 1 April 2021. People on the shielded patient list will be told they can begin to follow national restrictions alongside the rest of the population, but are still advised to take extra precautions to keep themselves safe from COVID-19. Letters to patients with updated guidance will be sent, starting from today, over the next two weeks, setting out practical steps people should take to reduce the risk of catching the virus, including continuing to maintain strict social distancing, to keep overall social contacts at low levels and to work from home if possible. Over 90% of shielders – clinically extremely vulnerable people – have now had a first vaccination.  Local councils and supermarkets will continue to provide support for shielders until 31 March, with supermarket delivery slots continuing to be available until 21 June 2021. DR UK Head of Policy Fazilet Hadi said: “The formal ending of the shielding programme will affect people in different ways. Some will feel relief that an end is in sight for the mental torture of enforced isolation, while others will feel that there is no real change, as they haven’t had any meaningful support for several months. “There is also a small pool of people who cannot have the vaccine for medical reasons who will now be left without any support, such as priority food deliveries after mid-June, and workers who may be called upon to return to work with no right to insist upon home working  . “The government needs to provide clear information to this pool of people on how their health can continue to be safeguarded while society returns to some sort of normal. “People who still feel anxious or need some level of support, should talk to their GP, local authority and local voluntary services.” DPOs demand removal of Coronavirus Act easements Disabled People’s Organisations from across the UK led by Inclusion London and Disability Rights UK have written an open letter to Health Secretary Matt Hancock asking for the suspension of easement powers for local authorities contained within the Coronavirus Act 2020. The Act will be reviewed by Parliament next week. The letter cites how evidence continues to mount about the lethal and disproportionate impact the pandemic has had on Disabled people. Disabled people have made up almost two thirds of all deaths. People of colour, including Disabled people of colour, have also been disproportionately impacted, facing higher risks and higher death rates from the virus. The letter argues that the provisions in Schedule 12 of the Coronavirus Act diminish Disabled people’s rights to care and support and should be removed. Disabled people should have full Care Act rights restored.   Eight councils officially implemented easements for a limited period last spring and they have not been used by any councils since. Given the Government’s road map to recovery, there is no justification for retaining these powers. Sections 92 and 93 of the Coronavirus Act allow for the easement powers granted to local authorities to be suspended by statutory instrument. The Chair of the Women and Equalities Committee, Rt Hon Caroline Nokes MP, has also written to health and social care and education Ministers urging swift action to remove the easements. DR UK’s CEO Kamran Mallick said: “These easements still hang over the heads of Disabled people, adding anxiety and uncertainty to what has been a devastatingly hard year for so many of us. It is only right that as the Government steers the country into the recovery phase, that they are suspended, and that Councils are given the resources they need to provide adequate care and support for those who need it.” Inclusion London CEO Tracey Lazard said: “Including the Care Act easements in the Coronavirus Act was a big mistake. This sent a clear message to disabled people that our rights and support can easily be removed. The pandemic has shown the government can find resources to make things happen, but unfortunately ensuring continuity of social care support for all disabled and people was not a priority. We heard many stories of people losing their social care support during the pandemic.  “The government must act now to make things right. The easements must be scrapped, the government must also recognise the importance of social care support for disabled people, ensure it is adequately funded and listen to our voices when developing proposals for social care reform.” To read the letter and for more information visit the Disability Rights UK website. Fears over right to protest under PCSC Bill Fears have been raised about the impacts of sweeping changes to rights to protest in the Police, Crime, Sentencing and Courts (PCSC) Bill, which had its second reading in Parliament this week. The PCSC Bill seeks to make the first major changes to the Public Order Act 1986 since 2003. Disabled campaigners fear it will remove the rights for people to undertake direct action – one of the main forms of protest which resulted in transport finally being made accessible, as Disabled campaigners handcuffed themselves to inaccessible trains and buses in the 1990s. Section 59 of the Bill, which has been voted through in draft form by MPs, would see protesters who put people at risk of  “serious inconvenience” or “serious annoyance” facing jail terms of up to a decade. There are also fears that people who present with non-neurotypical behaviours would face more threat of arrest, charge, conviction and imprisonment, with such behaviours often being misconstrued as acts of aggression, rather than non-neurotypicality, or anxiety, distress or stimming (which can include physical behaviours such as erratic movement). DRUK’s Head of Policy Fazilet Hadi said: “In a 2018 case at the European Court of Human Rights (Alexei Navalny v Russia) the court said: “Freedom of assembly as enshrined in Article 11 of the European Convention on Human Rights protects a demonstration that may annoy or cause offence to persons opposed to the ideas or claims that it is seeking to promote… Any measures interfering with freedom of assembly and expression other than in cases of incitement to violence or rejection of democratic principles – however shocking and unacceptable certain views or words used may appear to the authorities – do a disservice to democracy and often even endanger it.” “The Bill as it stands is in direct opposition to the Convention, to which the UK signed up in 1950. The Minister for Policing told Parliament last summer that the right to peaceful protest “will never be curtailed by this government”. And yet this Bill has the potential to undermine fundamental freedoms and silence already marginalised voices. “We would urge MPs to think twice about the place of protest in society, and how it can so often be a power for positive change where otherwise people would go unheard.” Read the briefing on the Bill on the Good Law Project website. COVID certification review – call for evidence The government has launched a call for evidence for its COVID Status Certification review, in essence, vaccination passports. The government is weighing up whether certification could and should play a role in reopening the economy, reducing restrictions on social contact and improving safety. Certification would be available to both vaccinated people and to unvaccinated people who have been tested. The government is looking to consider the ethical, equalities, privacy, legal and operational aspects of a potential certification scheme, and what limits, if any, should be placed on organisations using certification. Disability Rights UK is preparing a response to this call for evidence. We would ask DPOs to contact us with their evidence, concerns and views no later than noon on Tuesday 23 March. Email us at or call us on 0330 995 0400. ‘Blanket’ approaches to DNARs criticised in CQC report The Government has announced the publication of the Care Quality Commission’s CQC report into the use of Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decisions taken during the COVID-19 pandemic. The investigation was commissioned following concerns raised at the beginning of the pandemic around the use of ‘blanket’ DNARs (do not attempt resuscitation) decisions across groups of people, particularly people with learning disabilities and older disabled people in Care Homes. The report identified 500 cases where DNACPR notices were placed incorrectly. It tells the stories of people who were denied the opportunity to discuss their DNACPR decisions, as well as families and carers who felt unable to support loved ones or challenge DNACPR decisions. This poor practice is completely unacceptable and the report calls for additional training, greater personalisation and better recording and monitoring of decisions. The Government has pledged to tackle bad practice and will establish a Ministerial Oversight Group to drive progress on this critical issue. Half of people with a learning disability and autistic people reluctant to provide feedback on care  New research from the CQC has revealed that people with a learning disability or autism are more reluctant to give negative feedback on their care in case it increases pressures on staff or services.  Debbie Ivanova, Deputy Chief Inspector of Adult Social Care, said: “Listening to the lived experience of people with a learning disability and/or autistic people has to be at the centre of how we decide to regulate and improve care. It is so important to hear their voices and allow our approach to be shaped by this in order to properly address the challenges of closed cultures and inadequate care.   “Families and people with lived experience keep telling us that it’s so much harder to speak up in services that care for people with a learning disability or autistic people, and we’ve recognised this. The work I am leading will be about improving the way we can hear from people and making sure that their experiences drive the action we take.”  CQC research also showed that people with a learning disability and autistic people are more likely to accept health and social care providers offering a lower standard of care as a result of Coronavirus and that more than a quarter (27%) of survey respondents with learning disabilities and autistic people had noticed a lower standard of safety when accessing health and social care during the COVID-19 pandemic– more than double the average.   The CQC report Out of Sight – Who Cares? Released in October 2020, found that many people with a learning disability and or autistic people are still being looked after in unsuitable hospital environments, and some are subject to high levels of restrictive practice. People with a learning disability and autistic people should be cared for either in their own home, or in their communities, with as much choice as possible.    People can give feedback on their experiences of care, or those of someone they care for, on the CQC website or through their local Healthwatch. Local Healthwatch organisations can also help you with advice and information to access the support people need.  Boost to bus services Disability Rights UK has long been pressing the government and operators to provide bus services which will enable disabled people to access day to day activities more easily. The launch of the new government bus strategy has important implications for disabled people which at last recognises that buses are a lifeline to employment, education, medical appointments and leisure, as well as being essential to the economy. The strategy highlights key issues that buses will be more frequent, cheaper, greener, and easier to use as government continues its levelling up agenda, and councils and operators will work in partnership for the benefit of passengers. It says that passengers across England will benefit from more frequent, more reliable, easier to use and understand, better co-ordinated and cheaper integrated services and ticketing across all transport modes, so people can easily move from bus to train. The Department for Transport is also announcing the government’s ‘Rural mobility fund’, which enables on-demand services – such as minibuses booked via an app – to be trialled in areas where a traditional bus service isn’t appropriate. Disability Rights UK’s Stephen Brookes said: “The proposals are a welcome step in the right direction in delivering improvements for passengers. However delivering the scale of change needed to get people out of their cars and on to fast, frequent, clean, affordable and accessible  public transport will require a long-term, sustainable funding model to drive investment in the years to come.” Wheelchairs on planes – new prototype revealed A Denver, Colorado firm has unveiled a prototype of a new airline seat that will allow wheelchair users to fly on airlines in their own wheelchairs. Currently passengers in wheelchairs need to transfer from their wheelchair into a seating device to get down the narrow aisle and then transfer again into their airline seat. Read more.
Pre-order your new Disability Rights Handbook today for dispatch at the end of April 2021
Updated for 2021/22 including: Benefits for people living with health conditions, injury or disability and for carers, children and young people How the system works, how to claim and how to challenge a decision Support for people in education or work, not in work, looking for work or in retirement Getting and paying for care and support services ORDER NOW
Get page-by-page updates as legislation changes throughout the year. Published bi-monthly from June 2021 to February 2022 it will arrive in your email inbox in an easy to print A4 PDF format. ORDER NOW The same handbook just in an accessible word document format to allow searching. Delivered to your email inbox within 3 days of ordering. This will be available from May 2021.  ORDER NOW
Get Involved
DR UK blog National Diversity Awards shortlisted candidate Emily Nicole Roberts shares her experiences of transitioning from being a Disabled child to being a Disabled adult on our blog: Call for experts Channel 5 News is looking to diversify its pool of experts to be called upon for comment on national news. If you are an expert in your field (not just an expert in Disability – this could be education, law, economics, science, the arts etc), please email with your name, age, phone and best email contact, preferred pronouns, geographical location, field of expertise (with some evidence of this), accessibility requirements and consent to share your details. Get Ahead The latest edition of our Get Ahead newsletter is now available to download from our website. This edition includes information on Cerebral Palsy Awareness Week; our conference, Improving Post -16 Outcomes for Disabled Young People in Education, Training and Employment, tales from lockdown, information on the Youth Advisory Group and upcoming webinars; opportunities for budding artists and games and art reviews from students. Read the Get Ahead Newsletter. Cycling research CFE Research, with Disability Rights UK, Wheels for Wellbeing and Professor Brett Smith from Durham University, are undertaking research on Disabled people’s cycling habits on behalf of British Cycling and Sport England. The focus is on learning more about why Disabled people and those with long-term health conditions do or do not cycle, and what might encourage people to start cycling or cycle more. The research is about all kinds of cycling: for example riding a bicycle, a handcycle, a trike, a tandem, a recumbent, a side-by-side, a wheelchair tandem etc. either alone or with others.  You don’t have to own your own cycle to participate in the research. Register your interest. Chosen participants will be sent a £20 high street shopping voucher as a thank you. Find out more about the research here. An Easy Read version of the research information is available here. Free communications training Equally Ours is running free strategic communications training workshops online in April, May and June. For more information visit the Equally Ours website. Live-tweeting inquests George Julian is crowdfunding to attend coroners’ courts and live-tweet the inquests of people with learning disabilities and autism. She told the BBC she does this to bear witness to those individuals and to raise awareness of how they died. In the UK, people with learning difficulties often die more than two decades younger than non-disabled people. Watch the video on the BBC website. Benefits training courses   DR UK is offering two 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.  Introduction to Welfare Benefits will be held on 17 and 18 May. 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 – Monday 17 May 9.45am – 12.45pm   Part 2: Universal Credit, the wider benefits system and maximising income – Tuesday 18 May 9.45am – 12.45pm  Please click here for more information and to book your place.   Preparing for an Appeal Tribunal will be held on 29 and 30 April. 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 29 April 9.45am – 12.45pm  Part 2: Composing effective written submissions, preparing claimants for appeal hearings – Friday 30 April 9.45am – 12.45pm   Please 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.    Steph Cutler podcast series Disability allies take action to support their Disabled colleagues. They help build a disability-confident workplace from the inside out. In these webinars, Making Lemonade’s Steph Cutler answers common questions about how to ensure you’re being an ally, not a saviour, and practical steps you can take to be a ‘purple’ ally. RNIB/Blind Ambition podcast From 8-9pm on Tuesday 23 March, RNIB and Blind Ambition host part one of a two-parter webinar on where to look for jobs. To register, go to: For help, contact or email
Visit RNIB for further information. Disability positive ad casting ET Casting Ltd is searching for people 35yrs+ who are living with Long Term Conditions (LTCs) for a new charity ad campaign. It is looking for people to take part in a short, fun series of online training sessions that will culminate in a ‘Home Games’ physical exercise challenge at the end. Successful candidates will be paid £1000 each and need to be available between April and July. Part of the project includes participants chatting about their stories and experiences on camera to the media if required. Apply now. The deadline is Monday 22 March. EnAble magazine Read  the latest edition of EnAble magazine (March/April)  
Our Helplines 
Our helplines are operating as normal: Personal Budgets Helpline Telephone: 0330 995 0404
Opening hours: 9.30am -1.30pm on Tuesdays and Thursdays Disabled Students Helpline Telephone: 0330 995 0414
Opening hours: 11am-1pm on Tuesdays and Thursdays Welfare Rights Helpline for Member Organisations Telephone: 0203 687 0779
Opening hours: 10.30am-12.30pm Tuesdays and Thursdays
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