Good Read: Disability Rights UK Newsletter

Eighty-five per cent of people shielding feel unsafe going outside since the relaxing of lockdown rules on 1 June, according to a new survey by DR UK.

Only two-fifths of people shielding from Coronavirus have had the confidence to leave home since the regulations around shielding were eased.

Most people who left their home did so by themselves or with a family member, although some took the opportunity to meet someone outside their household following social distancing advice.

There was a very low level of reported trust in the government’s advice on shielding. Only 15% of people reported they trusted the government’s advice, and only 13% thought the government was following the best available scientific advice on shielding.

The limited list of impairments and health conditions produced by the government has left people with rare conditions or in moderate risk groups particularly confused. Respondents in these categories described particularly difficulties getting food and medication, as they were not able to access volunteer schemes or pharmacy deliveries. A third of people who reported shielding do not have conditions listed on the government’s official list.

Respondents described the government’s communication as being unclear and inconsistent, and many reported they trust their doctor more than the government.

Many respondents found the government’s language around shielding to be unhelpful, and were frustrated by feeling like they were under house arrest, best summed up as: “I’ve done nothing wrong, I’m not a criminal, I can’t help the fact I am ill but it feels like I have committed a crime”.

Many people who are shielding want to go outside but are worried about others not giving them enough space, or not being able to safely access parks or other open spaces where it is easy to maintain physical distancing.

Shielding has thrown people’s lives into disarray; described by one respondent as “I exist but do not live”.

Comments received from survey participants indicated that many feel isolated, alone and forgotten.

DR UK’s Head of Policy Fazilet Hadi said: “The government has failed to deliver strong support for disabled people and those with chronic health conditions throughout the Coronavirus crisis. It is clear that many people do not trust the government’s handling of the crisis to date. If it is to win trust, it must recognise that there are far more people who need proper support beyond those with immuno-suppressed conditions.

“People with autism, sight impairments and mobility issues have all been saying they cannot safely go out and maintain social distancing and may need extra support in terms of consistent home delivery services.

“There has also been a total lack of support to help disabled people boost their mental health and improve access to socialisation through digital means. Many disabled people cannot afford digital technologies, and have not had training in how to use them. Such technologies have been transformative for many people during lockdown – for everything from shopping, to socialising, and working, but many disabled people still remain shut out of digital access. This needs to change.”

DR UK received survey responses from a self-selecting group of 291 people between Friday 5 June and Wednesday 10 June 2020.

The Office for National Statistics has published its second statistical bulletin in the series Coronavirus and the social impacts on disabled people in Great Britain, presenting data from the National Opinions and Lifestyle Survey collected from 14 to 24 May 2020. The survey covers a wide range of topics, but we have pulled out a few that are of interest.

Disabled people were more likely than non-disabled people to report that the pandemic and its effects are negatively impacting their mental health than non-disabled people, and are also more likely to report they feel lonely. Disabled people are much more likely to stay in their homes all the time: just over a quarter of disabled people reported not leaving their home for any reason over the previous seven days, compared to less than one in ten non-disabled people. Disabled people are much less likely to report having left their home to exercise or to work, and are twice as likely to say they feel very unsafe outside their home compared to disabled people.

Disabled people are also more likely to report being unable to pay an unexpected, but necessary, expense of £850 (40% vs 25% of non-disabled people). One third of disabled people reported self-isolating because of the COVID-19 outbreak, compared to 15% of disabled people.

Statement on Black Lives Matter from DR UK CEO Kamran Mallick

From its inception, Disability Rights UK has been strongly committed to the principles of human rights and equal rights.

We have watched the rise of the Black Lives Matter protests in the past week and stand firm with the intention of those protesting. We stand with those who say: no more. No more to the inequalities which divide our society. No more to the lack of opportunities afforded to those who make up the minorities which make our society so richly diverse. No more to the lack of accessibility, in attitude as well as physical environment, which stops people from living the full and fulfilled lives they need and choose to live.

Read the full statement on our website.

Advance care planning

NHS England and NHS Improvement are undertaking a package of work with In Control and Disability Rights UK to provide advice, information and intervention as well as the recording and tracking of issues, running the ‘Be Human’ campaign.

https://be-human.org.uk/coronaheroes/

In mid-May, NHS England and NHS Improvement came together for a roundtable with a range of leading thinkers from the disabled rights movement, voluntary sector organisations, and specialist clinical directors.

NHS England and NHS Improvement then jointly issued a summary statement, which is published both on the NHS England and NHS Improvement website, and on the Disability Rights UK website, pledging that they are committed to ensuring the continued delivery of personalised care.

However, they acknowledge there have been recent failures where people’s wishes and preferences have not always been considered, especially in relation to Do Not Resuscitate notices.

Back in April, the British Medical Association (BMA), Care Provider Alliance (CPA), Care Quality Commission (CQC) and Royal College of General Practice (RCGP) issued a statement emphasising the importance of a personalised care plan. This was reiterated in a letter to local system leaders from NHS England and NHS Improvement in which it was stressed that advance care planning is undertaken on an individual basis.

Read the Coronavirus Advance Care planning template and guidance.

NHS visitor guidance

Influenced by legal action from disability campaigners, NHS England has changed its guidance on visitors. It now states that people who are supporting patients as carers or personal assistants should not be counted as additional visitors and that patients should be accompanied where appropriate to meet communication  and health and social care needs. Some feel the guidance isn’t clear enough but it is undoubtedly a step forward.

Read the guidance.

Amendments sought to Domestic Abuse Bill

Stay Safe East, a London-based disabled people’s organisation, along with allies, has been doing some great campaigning to influence changes to the Domestic Abuse Bill, which is currently going through parliament. The changes would mean much stronger protections for disabled people experiencing abuse.

Coronavirus help, advice and government updates

We are continuing to update our Coronavirus resources page. This week has seen the publication of new information on direct payments and the Coronavirus Job Retention Scheme in relation to Personal Assistants. You can find the information here: https://www.disabilityrightsuk.org/coronavirus

We want to know your thoughts on wearing face masks in public places, including on public transport. You can fill in our survey here until midday on Wednesday 17 June 2020.

Take the survey.

APPG dates

The next All Party Parliamentary Groups for Disability meetings will be held as webinars from 1pm on 25 June, on the topic of technology, and at 2pm on 9 July on higher education, in conjunction with  the APPG for Education.

To register your place, email Roberta Kirosingh at KIROSINGHR@parliament.uk.

Staying active during Coronavirus

DR UK’s Get Yourself Active programme is working with Sense to find out how disabled people have been staying active during the coronavirus outbreak, and if there is anything more that could support people to keep active during this time.

The project will be creating resources that reflect the views and experiences that have been shared through this survey, which will be useful for helping people to get and stay active during crises.

Participants will be entered into a draw to win one of two Amazon vouchers. The deadline is 17 July.

Take the survey.

Wheelchair users needed for market research into journey planning app

A medical market research company is looking to speak with wheelchair users (manual or electric) who live in London and/or travel regularly into London using public transport. The research is based on disability accessibility around London and they are hoping to get insights to help in the production of a journey planning app.

The research will consist of a 60-minute telephone interview later in June. In return participants will receive a £30 Amazon voucher as a thank you for their time.

Participants would need to be aged between 18 to 65 years, living in London or commuting there regularly and, prior to Covid-19, be using public transport at least three times per week.

As this is a study based on an app, all participants would need to use digital technology and own an iOS iPhone Device (iPhone 6 or newer). You don’t need a high level of digital literacy but you must be comfortable with installing and downloading apps as this will be a requirement for the interview.

Participants will be asked to download a free screen-sharing app called Lookback for the 60-minute session which will allow the moderator to see how they interact and use the app.

If you fit the criteria and are interested please email oliviamarshall@gilliankenny.com

Tell us about your experiences during Coronavirus

Disability Rights UK and In Control have set up a register to record people’s experiences of getting health, social care and treatment for Covid-19 during the time of the  Pandemic.

We want to hear the experiences of disabled people and people with long-term health conditions, their carers and family members, both good and bad, of getting support so that we can help out where we can, and learn for the future.  We will not record your name or personal details unless you want us to.

Report your experience of getting care or treatment during the Coronavirus pandemic.

Gig Buddies launches digital connection campaign

A significant number of people with learning disabilities have been facing an increased level of isolation during the coronavirus lockdown because they can’t access the internet.

25% of people with learning disabilities are locked out of the digital means that so many of us are using to stay in touch with friends.

Although lockdown restrictions are lifting, people living with a learning disability are not alone in feeling confused and anxious about the new rules and how they apply to them. They are also impacted by having a higher risk of respiratory issues, they may be dependent on carers, and those in supported living accommodation are subject to the government’s more stringent protection measures that apply to care homes. Being connected digitally will continue to play a major role in tackling the isolation that people with learning disabilities felt even before lockdown began.

Gig Buddies is a programme run by national charity Stay Up Late, that supports people with learning disabilities to see live music through their volunteering befriending service. In response to the coronavirus lockdown, the charity has brought many of its services online including; virtual coffee mornings, art clubs, evening socials and @Coronavirusfest – a virtual music festival to keep their beneficiaries, supporters and general public connected through music.

Visit the Gig Buddies website.

Lawstop free community care legal advice line

The Coronavirus Act 2020 has dramatically reduced people’s rights to health and social care services. Although councils and the NHS will do their best to prioritise those most in need, this means people across the UK might not get the care and support they need. During these unprecedented times, it is important that people experiencing difficulties are able to access legal help quickly.

Lawstop now offers a free, countrywide, community care legal advice line dedicated to assisting people with community care problems. If assistance is required to resolve an issue, it can check eligibility for legal help funding in order to provide this as it holds the relevant contract with the Legal Aid Agency.

It has also recently created an informal practitioners group. This brings together community care lawyers, campaigners, charities, advice services and others who work in the field of health and social care. The aim of the group is to share information about legislation and guidance, emerging case law, help to identify test cases, ask questions and make direct referrals to a large network of community care lawyers. Requests to join the group can be made by emailing info@lawstop.co.uk.

Visit the Lawstop website.

Recognising abuse or neglect

The Home Office, in collaboration with a number of other government departments, has produced information and guidance for those who are still operating in communities and may not be trained to recognise the signs of abuse or neglect. The guidance covers signs to spot and what to do if there is a concern.

The guidance can be found on the Home Office Brandworkz portal. The portal contains print and online versions of the guidance for England and another for Wales, available in both English and Welsh. If you need these in other formats or need more information, please contact jenny.shaw@homeoffice.gov.uk.

Post-Coronavirus employment seminars

There are two webinars coming up run by the Royal Society for the encouragement of Arts, Manufactures and Commerce and (RSA) and London Schools of Economics (LSE) about what the employment landscape will look like for disabled people post-Coronavirus, and the impacts of the virus on disability policy.

The RSA webinar on employment is on 16 June.

Sign up now.

And the LSE webinar on policy is on 23 June.

Sign up now.