Welcome to the weekly update. This update includes:
1. Coalition Update
New Staff Members! – This week we want to introduce you to our new Project Coordinator Karen.
My name is Karen Holdsworth-Cannon and I am the new Project Coordinator to help to find out what people would like from a new disability hub/portal or register. Some of you I know already as I have an Assistance Dog called Giuseppe and I am looking forward to meeting new people and getting to know you.
The idea of the project is to respond to the emerging needs of the Disabled community following the Covid-19 pandemic and beyond. Part of this work will be finding out what people would want from a new hub or portal and then to put a plan together to make it happen! We are really keen to make sure that this new resource is as helpful as possible for the disabled community, gives us all a sense of belonging and fun and also a useful place to swap information with others. You will see me out and about (virtually for now!) at various groups over the coming weeks to hear your ideas and priorities. In the meantime, if you would like to give me some ideas now, please use this survey: Ideas for a new hub.
I would love to hear from anyone who might like to be involved in a working group and you can email me on firstname.lastname@example.org
Charles Dickens Museum – On Monday, our virtual café hosted a trip to the Charles Dickens Museum in London. The tour concentrated on information and stories about Dickens’s life and work and family life in the home. We heard the very sad tale of the sudden death of his sister in law aged just 17. Poverty, social justice and inequality were prominent in his books as he wanted to raise awareness of this. Our members really enjoyed the tour and are looking forward to taking the opportunity to visit the museum in person when restrictions are lifted.
Request for Feedback – Wisley have contacted us to ask for feedback on the virtual tour they provided last week so they can better tailor their films for remote tours in the future. If you attended the tour please can you spare five minutes to give feedback.
- What was the most exciting thing you learnt about in the garden today?
- If we made another film what would you like to see more of?
- If you haven’t visited Wisley before would you like to?
- Is there anything else that you’d like us to know?
2. Social/Peer support coming up
Monkey World! – Our last virtual visit this month is to Monkey World! The visit will take place on Wednesday 28th April at 11am. Full log in details for this trip are listed below.
Join Zoom Meeting
Meeting ID: 858 5897 0687
One tap mobile
0 800 260 5801 United Kingdom Toll-free
Save the date – Our first virtual trip in May is to the Yvonne Arnaud Theatre on Wednesday 5th May at 11am. Log in details to follow.
Virtual Cafés – We run two virtual cafés during the week on Monday and Friday. This is an opportunity to have a casual chat and get to know fellow members. Join us on Monday at 11am or Friday at 11.30am.
3. Surrey Fire and Rescue Service – Community Survey
Would you like the opportunity to influence your local Fire and Rescue Service? Surrey Fire and Rescue Service are seeking your help so that they can learn more about you, the people who make up the residents of Surrey. They would like to understand more on how you would prefer them to communicate with you, and how they can be more accessible. They would also appreciate your views on how they can make the Fire and Rescue Service more appealing as a career option to people from a variety of communities and backgrounds – and to increase awareness about the broad range of career options they offer. This short survey should take about 5 minutes to complete – please do take part, and have your say!
To complete the survey please use the link here
4. Surrey Care Home Providers Only – Making vaccination a condition of deployment in older adult care homes
The Government published a consultation on making vaccination a condition of deployment in older adults care homes.
“While vaccination uptake rates are increasing slowly week on week, there are still a high number of older adults care homes which do not have the level of protection needed to reduce the risk of outbreak. To increase vaccine uptake, the government is considering amending the Health and Social Care Act 2008 (Regulated Activities) Regulations 2014. This would mean older adult care home providers could only use those staff who have received the Covid-19 vaccination (or those with a legitimate medical exemption) in line with government guidance”.
More information can be found here Making vaccination a condition of deployment in older adult care homes – GOV.UK (www.gov.uk) The deadline for responding to the consultation is Friday 21 May 2021.
The easiest way to participate is by completing the public survey: Making vaccination a condition of deployment in older adult care homes (dhsc.gov.uk)
More information can be read here
5. Adult Social Care Monthly Briefing
6. Surrey Faith Links Newsletter
7. Disability Rights UK Round up
Here are three articles from the Disability Rights UK E Newsletter which may interest you. Sign up for the DRUK newsletter here.
NICE Guidelines on Chronic Pain
The new NICE guidelines on chronic pain are causing anger and distress in the chronic illness and chronic pain communities.
Catherine Hale, from Chronic Illness Inclusion, said:
“For many disabled people living with chronic pain, pain relief medication can make the difference between leading a fulfilling life and one that is consumed by distress. The new NICE guidelines have devastated the chronic illness and chronic pain communities because they will deny the pain relief that we rely on to function on the basis of a somewhat arbitrary distinction between primary and secondary pain. Very often the distinction between primary and secondary pain depends on the success of the treating physician in diagnosing the cause of pain. Many conditions causing chronic pain, such as multiple sclerosis, endometriosis and EDS/hypermobility syndromes can take years to diagnose or lack proper diagnostic tests. Exercise, talking therapies and anti-depressants can help with some forms of pain but applying them as a blanket solution when standard tests come back as “normal” can be very harmful. Research has shown that exercise therapy can make things worse for some chronic illnesses like ME/CFS and Long Covid. Above all, the NICE judgement is deeply invalidating and disempowering for disabled people who are experts in managing their own pain, and who have gained no benefit from anti-depressants or CBT as pain-relief treatments. It implies both that their pain is “all in the mind,” and that they can’t be trusted with drugs. The result will be increased stigma as well as diminished opportunity to be active and take part in society.”
The NICE guidelines can be read here
Easy Read Election Materials
Learning disability charity MENCAP have produced a range of election easy read guides. The guides have been written with the aim of getting as many people with a learning disability voting as possible in the upcoming elections. The elections, which are taking place across England, Scotland and Wales, will be held on 6th May. Please see below for more information and to download the guides:
DR UK Support RNIB Tactile Strips Campaign
Following a meeting this week between Disability Rights UK and RNIB Policy Officer Roisin Jacklin and North West Regional Campaign Officer Terri Balon, we are supporting RNIB’s campaign to increase the provision of tactile strips on rail station platform edges. This follows the tragic death last year of Cleveland Gervais, who fell onto the rail tracks at Eden Bridge station and was struck by a train.
DRUK Rail Policy Adviser Stephen Brookes says, ‘An urgent rethink is needed by the industry on tactile strip installation, as the current policy appears to be that this is only to be undertaken during a full station refurbish, but we cannot put more lives at risk by having to wait for up to 10 years for most stations to be made compliant’.
The Rail Accident Investigation branch made several recommendations following the incident, with one being that a plan is developed to install strips as a priority and timely manner. This is supported by information which shows that that following the installation of tactile surfaces the rates of people falling from platforms reduced by around 65 percent for visually impaired people and around 45 percent for the general population.
Stephen says ‘It is vitally important that we see the wide-ranging benefits which demonstrate that tactile paving is not only vital for blind and partially sighted people but is an important safety measure for everyone, and that the fact that about half of all mainline stations do not have tactile paving is a real danger to many rail passengers. A Freedom of Information Request by Greater London Assembly Member Caroline Pidgeon last year found that over a third of platforms in the region did not have tactile paving, and we know that around the country even main line stations have many non-compliant platforms.
Disability Rights UK is helping to promote the RNIB petition calling for tactile strips to be installed across the network and stations to be made safe. The petition can be accessed by clicking Petition: Railway stations must be made accessible after report finds blind and partially sighted people ‘at significantly higher safety risk’ – RNIB – See differently. The RNIB team have also produced a powerful short film with Sehka, Cleveland’s partner. This is a link to Sehka’s video on Youtube