Surrey Coalition of Disabled People

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3rd December 2020 Coalition update

Welcome to our weekly email update.  This edition includes:

1.  Coalition Update

2.  Advice for wearing a face mask and hearing aids

3.  Stay safe and avoid waiting in A&E – just use 111 first if you can

4.  TV Licence SCAM Information

5.  Spelthorne Committee for Access Now (SCAN) November Newsletter

6.  NHS and care services – how you can help change

7. Age UK Surrey – Online Christmas Carol Service

8. Young Peoples Groups at Mary Frances Trust (MFT)

9. Disability Rights UK E Newsletter

10. FoCUS Dec-January meeting dates

11. How to join a Zoom meeting using Synapptic

12. Young Disabled adults and Carers virtual group 7


1.  Coalition Update

NHS 111 – You will read further on (item 3) of Surrey Heartlands joining the phased National roll-out of ‘Think NHS111 first’.  The Coalition has been working very closely with Sight for Surrey to raise our concern – nationally as well as locally, that an inaccessible service is being relied upon so heavily and a fear that this will lead to inequitable access to health services and widen health inequality.  As members will know, NHS 111 does not currently allow for two-way SMS contact which excludes many people from being able to use it.  Sight for Surrey and the Coalition have worked with Surrey Heartlands representatives to raise this issue and they are investigating the potential of a local trial of an additional contact method – we will keep you informed.  In the meantime, if you need A&E care, please do not be put off attending – you do not need to have been in touch with NHS 111 to get help in an emergency from A&E.  Please also consider item number 6 – making a report to the CQC as they seek to hear the experiences of disabled people in accessing health and care.     

Virtual Farm Visit! – Join us on Monday 7th December for a virtual guided tour around Cronkshaw Fold Farm.  This will be followed by five minutes of ‘goat therapy’ with one of the farm goats!  Join us at 11am for some fun at the farm, no wellies needed!  As usual, you can choose if you would like to join via zoom or by telephone (freephone) or by SMS text relay. 

12 Days of Christmas – We would love to hear from you about the one thing that would make life better for you.  We would like to put together a series of tweets on those things that could be done to make life better and more accessible for disabled people.  We will then ‘tweet’ these ideas to encourage everyone to do something that would make life better for disabled people in Surrey.  We will be using the hashtag #DisabledAdvent which was started by a Disability Rights activist.

Young Adults Group Christmas Party – Our young adults group will celebrate Christmas in style on Thursday 10th December at 7pm.  There will be a number of fun activities including a Christmas quiz, name that Christmas tune and a singalong led by one of our very talented directors!  Christmas jumpers will be very welcome!

Book Chat – On Wednesday the group will discuss the Children’s Treasury of Miligan. If you would like to join the group please use this link at 2.30pm on Wednesday!

It’s Friday…What shall we do? – There’s a casual relaxed chat with Guy on Fridays at 2.30pm.

Tech Update – Please see the attached document, a tutorial which guides you through how to join and participate in a Zoom meeting using the Synapptic app. 

FoCUS Meeting Dates – The dates for FoCUS meetings in December 2020 and January 2021 can be found on the document attached.


2.  Advice for wearing a face mask and hearing aids – One of our members was sent the helpful document attached with tips on wearing a face mask and hearing aids.


3. Stay safe and avoid waiting in A&E – use 111 first if you can – People in Surrey who need urgent NHS care are being asked to use NHS 111 before they decide to walk into the local Emergency Department (ED) if they can. 

The new approach is to try to help with maintaining social distancing, reduce the risk of spreading Covid-19 and keep patients and staff as safe as possible.

NHS 111 will provide help straight away; if you need urgent care they will book you in so you can be seen quickly and safely. They may signpost you to an alternative service where you can access the right care in the right place.

Surrey Heartlands will go-live on 1 December as part of the national roll out.

Anyone who attends the emergency department (A&E) without an appointment from NHS 111 will still be seen but could be directed to other services for treatment. Those with appointments from NHS 111 will also be given priority unless there is a medical need.

People with life threatening conditions that need emergency attention should still call 999 (or by using SMS text.  You MUST register first https://www.emergencysms.net/). Likewise, if the condition is not serious, they should still seek advice from their pharmacy or make an appointment with their GP.


4. TV Licence SCAM Information – Please see booklet below


5. Spelthorne Committee for Access Now (SCAN) November Newsletter – Please see document below


6. NHS and care services – how you can help change – Disability Rights UK have been asked by the regulator for NHS and care services in England, The Care Quality Commission (CQC), to invite those who live with a disability or long-term health condition and their family members, to share their experiences with the CQC so that future plans can use those experiences to improve their services.

The CQC identifies that it receives feedback from patients and their family members about how they found their treatment, but has not previously focussed on the needs of disabled people – around 20% of the population.  This is your chance to share your experiences – both good and bad – about visit’s to your GP, physiotherapy, care home, hospital, etc.  The easy to complete webpage the CQC has set up – entitled; ‘Tell Us About Your Care’ can be accessed from this link.

For too long the NHS and social care has been ‘one size fits all’, but now disabled people and their families can use their own stories to help the CQC develop a future service that has their needs at it’s heart.

Please complete the ‘Tell Us About Your Care’ report, and share this email with friends who could take advantage oVf this opportunity too.


7. Age UK Surrey – Online Christmas Carol Service – Join Age UK Surrey and Guildford Cathedral on Friday 18th December at 11.00am for a free online carol service.  Carols led by the Guildford Cathedral Singers, welcome by the Dean of Guildford the very Reverend Dianna Gwilliams,  Christmas songs by Tormead Junior school and a performance by the Rock Choir.  To view the service an make a donation towards the work of Age UK Surrey visit www.ageuk.org.uk/surrey For further details please contact us on 01483 503414 or email enquiries@ageuksurrey.org.uk


8. Young Peoples Groups at Mary Frances Trust (MFT) – Please see attached Posters


9. Disability Rights UK E Newsletter

AGM and Conference – thank you!
The DR UK AGM and annual conference saw a massive uptake in attendance as we went online for the first time. For those who attended, a short survey should have found its way into your inbox this morning. We would be extremely grateful for your feedback on how it went for you, what topics you’d like to see next year, what guests you’d like to hear from, and what we could do to make it more accessible. We would like to thank Sam Renke for hosting, Clenton Farquharson MBE, Shaun Webster MBE, Anne Wafula Strike MBE, Baroness Jane Campbell and Saba Salman for being our guests and sharing such thought-provoking, heart-swelling insights. We would also like to thank Lucy Aliband and Roger Berry, our outgoing trustees for their diligence and hard work, and to welcome Shelley Simmons, Greg Smith and Laura Swainbank as new trustees, and welcome back Martin Stevens who returns as chair of the board
News Round-up
Government refuses to commit to keeping or extending the £20 per week uplift to Universal Credit The Secretary of State for Work and Pensions Dr Thérèse Coffey has said today that the temporary £20 per week uplift to Universal Credit – due to end from April 2021 – is separate from the annual review of benefit rates. The benefits annual review took place on Wednesday, alongside Rishi Sunak’s Spending Review. DR UK Head of Policy Fazilet Hadi said: “The Disability Benefits Consortium first wrote to the Chancellor about a legacy benefit uplift back in June. It has still heard nothing back from the Exchequer. “The failure to provide an uplift for two million people shows government’s flagrant disregard for disabled people. “Yesterday at the APPG on Disability the Disability Minister Justin Tomlinson assured us of the government’s commitment to radical positive change for disabled people. The Chancellor’s silence on calls for an uplift today makes the Minister’s words ring hollow.” Read more on our website. DR UK: Spending Review fails disabled people The Chancellor, Rishi Sunak, made no commitment to extend the current £20 per week uplift to Universal Credit beyond April 2021 in his Spending Review on Wednesday. Neither did he commit to extend the increase to over two million disabled people on legacy benefits including Employment and Support Allowance. This failure to act leaves millions of disabled people with insufficient money to live on with dignity and choice. In the same spending statement, the Chancellor continued the government’s approach of treating health and social care differently, despite their equal importance in supporting people who need care. The NHS was provided with an additional £6.3 billion, whilst social care was given £1 billion, with only £300 million in grant form with the rest to be raised locally. Long awaited social care reform proposals are promised for 2021. Anti-poverty campaigners and those fighting for much needed investment in social care have been left amazed and outraged by the failure to support those in society in most need. Caroline Abrahams, Charity Director of Age UK and Co-Chair of the Care and Support Alliance said: “The Government passed up the opportunity to play fair with social care, instead granting it insufficient extra money to safeguard the current level of services through next year. Against the context of the pandemic, which is both driving up the level of need, and weakening the finances of providers, this is a decidedly reckless approach. Local authorities are once again being asked to square an impossible circle and this ungenerous settlement does very little to help the NHS either. However, it’s older and disabled people, and their families and carers, who will as ever pay the biggest price, with more likely to have to manage without the support they need. This is a bitter pill to swallow, especially after everything social care has been through this year.” Mencap said: “The Government seems to be waiting for the roof to fall in before repairing the leak. We needed emergency funding now and pinned our hopes on the Chancellor’s statement. A bold plan for social care reform alongside long-term funding for a sustainable future is critical – continuing to kick the can down the road just isn’t good enough.” Fazilet Hadi, Disability Rights UK’s Head of Policy said: “The Chancellor and the government have shown no compassion for those who require social care and those living in poverty. The continued distinction made between health and social care is breathtaking. Why is supporting someone in hospital viewed as more important than supporting someone in their own home, supported living or a residential setting? How can it possibly be justified to withhold the £20 per week uplift from disabled people on legacy benefits? This lack of empathy for the lives of millions of disabled people doesn’t bode well for the direction or content of the government’s soon to be published National Disability Strategy.” New tiers guidance issued The government has released information about what will happen across the country after lockdown ends. From 2 December, the UK’s counties and cities will be divided up into tiers, with different rules about what people can do, where they can go, and what businesses can open. New letters are expected to be sent out to those currently on the clinically extremely vulnerable list. Find out more on the government website. New film by Sia sparks ‘cripping up’ backlash Internationally acclaimed singer Sia has been universally criticised for employing a neurotypical actress to portray the autistic lead character in her new film, Music, after releasing a one minute trailer announcing the film. Due out in February, the film stars Maddie Ziegler, Sia’s long-time collaborator, as Music, a non-verbal autistic person. Thousands of people have pitched in on the star’s twitter account to accuse her of ableism and allowing ‘cripping up’ by casting Ziegler in the lead role. Sia’s response to the backlash was to post a series of tweets: “Grrrrrrrrrr. F****ity f****. why don’t you watch my film before you judge it? FURY…I cast thirteen neuroatypical people, three trans folk… as doctors, nurses and singers… My heart has always been in the right place… I had two people on the spectrum advising me at all times… The character is based completely on my neuro-atypical friend. He found it too stressful being non-verbal, and I made this movie with nothing but love for him and his mother. “…I’ve never referred to music as disabled. Special abilities is what I’ve always said, and casting someone at her level of functioning was cruel, not kind, so I made the executive decision that we would do our best to lovingly represent the community. “…I actually tried working with a beautiful young girl non verbal on the spectrum and she found it unpleasant and stressful. So that’s why I cast Maddie.” Critics of the casting include presenter and activist Mik Scarlett, who said: “I wasn’t going to weigh in on this but by posting this tweet it is obvious you’ve missed the point. The film may be enjoyable but the casting is offensive to the community the film is about. Any portrayal is as much about casting as it is story. “As a disabled person who has worked in the arts since the early 80s I’ve seen similar reasoning for not casting disabled talent given over & over. They weren’t legitimate then, they really aren’t now. Creatives can either lead to an inclusive future or continue exclusion.” DR UK’s Media and Communications Manager Anna Morell said: “It’s frustrating that despite the voice of disabled people becoming increasingly loud on this issue, decision makers in film making are still refusing to grasp the fact that there is a wealth of disabled talent out there which is not winning the on-screen roles about the issues they are best placed to represent in modern cinema. Hollywood is slowly starting to understand that diversity includes race, but it’s still got a long way to go to show that it understands that diversity and inclusivity also includes hiring disabled people to produce disabled people’s stories.” Terminally ill people in ‘vicious cycle’ of fuel poverty The Marie Curie charity has published a new report on the impact of fuel poverty on terminally ill people.  The report shows that terminally ill people may experience a vicious cycle of fuel poverty. Their deteriorating health means they have to spend a lot more to heat their homes sufficiently – which some may struggle to afford due to depleted incomes and the other significant costs associated with their illness – but the consequences of living in a cold home can be severe; leading to new infections, making existing symptoms flare up or become worse, affecting their mental wellbeing and, in the worst cases, even hastening their death. The report makes a number of recommendations to help terminally ill people out of fuel poverty, including: Reform of the Special Rules for Terminal Illness in benefits law and the five-week wait for Universal Credit; Automatic access to the Warm Home Discount scheme for terminally ill people and a new vulnerability component in the eligibility criteria for Winter Fuel Payments; Universal implementation of the recommendations in NICE guideline NG6 (Excess winter deaths and illness and the health risks associated with cold homes); Targeted information and guidance on staying warm and combatting fuel poverty for people who are terminally ill. Align social security with health and care systems and fully fund advice provision: open letter to Government An alliance of organisations working across social care, mental health, disability, homelessness and welfare rights has sent an open letter to the Government highlighting its collective view that social security benefits’ policy and delivery “…must now be explicitly re-aligned with the objectives of our health and care system and become concerned with keeping people well, promoting independence and wellbeing and tackling inequalities.” Read more on our website. APPG for Disability The All Party Parliamentary Group for Disability met this week on Zoom. Along with Lord Hannay; Vicky Foxcroft MP, Shadow Minister for Disabled People; Diane Kingston OBE; Chris Wallace from the United Nations Association UK; Rebecca Hilsenrath, CEO of the Equality and Human Rights Commission, Minister for Disabled People, Justin Tomlinson MP was present to comment on a range of issues. In relation to housing, he said: “I totally agree with Vicky, it’s vital in those new developments we are future proofing housing.” In a discussion about benefits, Vicky Foxcroft told those present that all sanctions do “is drive people into further poverty”. Justin Tomlinson commented that post-Covid “a menu of options” would be “a good way forward” for disabled people undergoing assessments for benefits, and that the DWP needed to do “a huge amount of work around severe conditions criteria” when it came to assessing the length of benefit awards. He said: “The idea of PIP is to trigger when to identify when people will need a higher level of support… it is in no-one’s interest to do unnecessary assessments but neither do I want to repeat the mistakes of the DLA.” Lisa Cameron MP, chair of the APPG on Disability said that it was “really important to minimise the levels of stress for people” undergoing assessments, and Rebecca Hilsenrath said “we would like the government to review how long it takes to get benefits”. SSAC: accessibility of mobility support for disabled people must be improved The Social Security Advisory Committee (SSAC) has published a new report that concludes that the Motability scheme should be improved in terms of its accessibility to disabled people. The report explores the current support in Motability coupled with the availability of the DLA and the PIP mobility component. DR UK was one of the organisations that gave oral evidence to the SSAC. The SSAC recommends that the DWP should use the forthcoming Green Paper that will look at how the DWP and the benefits system “can best help disabled people” to consider some of the difficulties claimants have using the Motability Scheme. Read more on our website. SSAC: have the DWP’s Covid-19 support measures been effective? The Social Security Advisory Committee (SSAC) has published a detailed report reviewing the effectiveness of the temporary social security measures that have been introduced by the DWP during the Covid-19 pandemic. Its review also explores the degree to which they could be refined further, or improved, as the Government may consider transitioning some of them into a longer-term or permanent approach. DR UK was one of the organisations that gave evidence to the review. Read more on our website.
Get Involved
International Day of People with Disabilities Thursday 3 December is the International Day of People with Disabilities. The 2020 theme ‘Not all Disabilities are Visible’ focuses on spreading awareness and understanding of disabilities that are not immediately apparent, such as mental illness, chronic pain or fatigue, sight or hearing impairments, diabetes, brain injuries, neurological disorders, learning differences and cognitive dysfunctions, among others.  According to the WHO World Report on Disability, 15% of the world’s population, or more than one billion people, are living with disability. Of this number, it’s estimated 450 million are living with a mental or neurological condition, and two-thirds of these people will not seek professional medical help, largely due to stigma, discrimination and neglect.  See the International Day of People with Disabilities website for more information. 4th International Forum of Social and Productive Inclusion for Disabled People The Maria Luisa de Moreno International Foundation (MLMIF) invites you to be part of the 4th International Forum of Social and Productive Inclusion for Disabled People. The event hosts a virtual fair where different organisations will share best practice in social and productive inclusion.  Within this virtual space, representatives from different countries will exchange their experiences, and share their achievements, in pursuit of dignifying disabled people as agents who contribute to change and societal progress. The event will take place on 3 December 2020 in the online Virtual Convention Centre of the MLMIF. You can register for this event for free. For more information about the event please go to: FIMLM.ORG/ForoMundialPCD. The page will launch in Spanish and different languages can be selected by clicking ‘Translate’ at the foot of the page. New Media Trust guide Organisations looking for tips on how to support their disabled spokespeople can now read a new guide produced by Media Trust and Scope created as part of Media Trust’s Reframing Disability in News programme in partnership with the BBC’s 50:50 Project. Read the guide. Design competition To raise awareness of the day-to-day challenges people with spinal cord injuries face, Bolt Burdon Kemp, in collaboration with Cereba, a charity helping children with brain conditions, has launched a competition in a bid to discover a new generation of designers who’ll design items for people living with spinal injuries.  The winning entry will receive £3,000 with an additional £2,000 being awarded to the winning team’s university. Read the full terms and conditions of the competition.
Genuine Radar Key – Priority access to accessible public toilets around the UK
Radar (now part of DR UK) were the original creators of the National Key Scheme. We still use key sales to maintain the scheme, as well as to support our work influencing local councils, leisure providers, shopping centres and supermarkets. This activity will never be more important than in the coming months as we emerge from the pandemic.
If you need to be out and about, make sure you have access to the facilities you require. All our keys are individually tested and guaranteed by our master locksmith. Don’t risk buying cheap copies that may not work and where the funds are not ploughed back into supporting disabled people.  Genuine Radar Key: £4.75 inc P&P – available from our online shop. BUY NOW
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: 10.30 to 12.30 Tuesdays and Thursdays.

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