September 2020


2021 Newsletters     
Summary of 2021 newsletters   
Summary of 2020 newsletters     
Summary of 2020 COVID Newsletters     
Archived Newsletters 
Current News  

CORONAVIRUS – COVID19 - TELL US HOW YOU’VE BEEN AFFECTED    
Local Organisations with an involvement in Disability and Health support services across Surrey are encouraged to submit regular reports and updates. 

Are you arranging ‘virtual’ open meetings and events? – let us help to publicise them.  Nominate any ‘Local Heroes’.  Please contact me on info@spelthorneaccess.org.uk or text me on 07853 038933. 

SURREY LIBRARIES HAVE REOPENED  
From Tuesday 1 September: Ashtead, Caterham Valley, Cobham, Cranleigh, Esher, Haslemere, Horsley, Merstham, Molesey, Shepperton, Stanwell, and Sunbury will allow people to browse, borrow and return books.

Lightwater opens for the Click and Collect service from Wednesday 2 September and will progress to browsing from Monday 14 September.

Ash, Banstead, Bookham, Caterham Hill, Chertsey, Dittons, Ewell, Hersham, Knaphill, Leatherhead, Reigate and Walton opened on 3rd August and Ashford and Addlestone opened on 18th August,

Computer access has restarted at Camberley, Dorking, Egham, Epsom, Farnham, Godalming, Guildford, Horley, Oxted, Redhill, Staines, Weybridge, Woking.

To ensure the library remains a safe space to prevent the spread of Coronavirus, a range of measures have been introduced. These include limits on the number of visitors at any one time, 2 metre social distancing measures, cleaning of PCs between use and the quarantining of returned stock for 72 hours before items are reissued. Enhanced cleaning will be taking place throughout the day in open library buildings. Face coverings must be worn inside all library buildings, in line with current Government guidance.

Please check the opening times before you visit and refer to our coronavirus information on our webpages, where you find details of how we are keeping our staff and customers safe.  
https://www.surreycc.gov.uk/libraries/news-and-events/library-news/coronavirus .

DISABILITY RIGHTS UK (DRUK)
We are the leading charity of its kind in the UK. We are run by and for people with lived experience of disability or health conditions.

To contact Disability Rights UK (DR UK) see   www.disabilityrightsuk.org/contact-us

Disability Rights UK (DRUK) – News In Brief

ADULT SOCIAL CARE – INFORMATION AND ENGAGEMENT TEAM – News in Brief  
Keep Surrey Safe  
Do your part to ‘Keep Surrey Safe’. Surrey County Council has updated their coronavirus public information using a simple infographic to reflect the latest government guidance to include isolating for 10 days instead of seven days if you have tested positive for coronavirus. 

Mobile Testing in Surrey  
Now ANYONE with coronavirus symptoms should self-isolate and get tested. Visit the NHS coronavirus website https://www.nhs.uk/conditions/coronavirus-covid-19/ or call 119 to book a test. When you book a test, the team will book you at a testing site that is at the most convenient location for you. You may also have been asked to get a test if you are about to go into hospital, for example, for surgery. 

The Department of Health and Social Care has provided three mobile testing units (MTUs) for use in Surrey which they will add to or re-deploy elsewhere in the country should the need arise. The units are visiting areas in Surrey to ensure a good geographical spread of testing sites and will be moved to wherever the demand for testing is highest.

All testing sites need to be pre-booked online.  You won't be able to just show up without a pre-booked appointment. This is to manage the amount of people on site at any one time for social distancing purposes.

Weekly Coronavirus Intelligence Reports For Surrey Now Available    
Surrey County Council is producing weekly intelligence reports https://www.surreycc.gov.uk/people-and-community/emergency-planning-and-community-safety/coronavirus/testing/figures-and-statistics that provide up to date coronavirus data for Surrey. They include details of any outbreaks, increases in cases and our current R number. It also provides a breakdown by district and borough council area and a comparison to our neighbouring local authorities in the South East.

The NHS Is Still Here For You – Make Sure You Receive The Right Care When And Where You Need It 

Despite current social distancing measures, your local NHS is still here for you. Don’t put off seeking urgent treatment or advice from your doctor, midwife or other care expert when you are feeling unwell or worried about a new, or existing, condition.

Seeking medical help is one of the four reasons that people can safely leave home, in line with current government guidance. Every care setting including hospitals and GP practices now have robust measures in place to keep you and your family safe during face to face appointments.

Please only attend these appointments if you have been advised to do so and you and your family members are not showing any signs of COVID symptoms. If you are a professional, please share these messages so residents can access the right care when they need it.

The Distance Aware Initiative    
The Distance Aware scheme is a national initiative to enable individuals and organisations to politely prompt ongoing distancing and respect of individual social space. The scheme was designed to help the group of people with who have underlying health conditions politely enforce their need for social distancing.

There are a number of ‘badges’ which can be downloaded to your phone or printed to assist in politely enforce social distancing. 

If you use assistive technology (such as a screen reader) and need a version of this document in a more accessible format, please email publiccorrespondence@cabinetoffice.gov.uk. Please tell us what format you need. It will help us if you say what assistive technology you use.  
https://www.gov.uk/government/publications/please-give-me-space-social-distancing-cards-or-badges

Fraud: Banks Reveal The 10 Coronavirus Scams To Be Wary Of + Green Homes Scheme Scams      
Local councils have recorded a 40% increase in reported scams since the start of lockdown, while Citizens Advice estimates one in three people have been targeted by a Covid scammer.

Fraudsters are using the pandemic as an excuse to trick people out of their cash, according to British banks. UK Finance has warned that scamsters are preying on consumers' financial fears and has named ten Covid-19 scams the public should be wary of. "Criminals are impersonating trusted organisations like the NHS or HMRC to trick people," the trade body said.

Trading Standards has also announced an increase in Green Homes Grant Scams. Details of the new government scheme launches in September and details about the scheme have not yet been announced as a result any calls you may receive from company about this scheme may be a scam.

1. Fake government emails, which look like they are from government departments offering grants of up to £7,500.   

2. Scam emails offering access to "Covid-19 relief funds", which encourage victims to fill in a form and hand over their personal information.    

3. Official-looking emails offering a "council tax reduction".    

4. Benefit recipients are offered help in applying for universal credit

Health scams 

5. Phishing emails claiming that the recipient has been in contact with someone diagnosed with Covid-19.   

6. Fake adverts for non-existent coronavirus-related products, such as hand sanitizer and face masks

 Lockdown scams 

7. Fake emails and texts claiming to be from TV Licensing, telling people they are eligible for six months for free because of the pandemic.  

8. Emails asking people to update their TV subscription services payment details by clicking on a link which is then used to steal credit card information.   

9. Fake profiles on social media sites are used to manipulate victims into handing over their money.   

10. Fake investment opportunities are advertised on social media sites, encouraging victims to "take advantage of the financial downturn".

 For more details on the scams visit the BBC website https://www.bbc.co.uk/news/business-53573408     

SEND Local Offer Consultation under way      
Surrey County Council and partners are asking for young people with Special Educational Needs and/or a Disability (SEND), their parent/carers and the practitioners supporting them, to share their views and experiences of its Local Offer website.

All local authorities must have a Local Offer website that provides information and the details of services available for children and young people with SEND and their families. The SEND local offer consultation aims to understand if Surrey’s Local Offer website is helpful, easy to use and gives those using it the information and advice that they need. It will also establish if the Local Offer is being sufficiently promoted and whether those visiting the website feel able to feed back about its development. 

DISABILITY EMPOWERMENT NETWORK (DEN) – NORTH SURREY    
North Surrey Disability Empowerment Network covers the areas of Runnymede, Spelthorne, Woking & Surrey Heath and is one of three groups of local disabled people, and carers, who meet up quarterly with representatives from local organisations like the NHS and supportive charities for information and advice. Next Meeting on Monday 7th September 2020

Please Note All Empowerment Meetings Are Being Held Virtually’ During The Covid19 Pandemic And will start at 1pm after the Virtual Café sessions.

Please contact Yasmin Broome, Engagement Officer at Surrey Coalition email: Yasmin.Broome@surreycoalition.org.uk 

Telephone or SMS text 0745 5267424 for details of how to participate in meetings remotely.

 YOU DON’T LOOK SICK: - ‘I was told I was imagining my symptomsEdited from a series published in Metro.co.uk telling the stories of people with invisible illness and disabilities.  

Nicola Deeley, 22, Winsford, Cheshire, lives with fibrous dysplasia of the skull – a bone disorder in where scar-like tissue develops instead of normal bone. It causes pain, misshapen bones and can lead to fractures.

The condition can occur in other parts of the body but when it is specifically in the skull, it can cause changes to the shape of the face or in some cases, hearing or vision loss. For Nicola, it also causes chronic migraines. 

Research and development associate scientist Nicola started to notice something was wrong when she was 13. ‘I first started to complain of pain in my head and in my rib cage which was swollen. ‘It took three years of constant hospital appointments, being told I was imagining my symptoms and being advised to just get on with it until I was given a bone scan which revealed a large tumour in my skull, which had caused a severe vitamin D deficiency leading to swelling in my rib cage.

When I was 16, I had surgery to remove part of the tumour and conduct a biopsy, I received a phone call a few weeks after the surgery to be told I had fibrous dysplasia. I was later diagnosed with chronic daily migraines when I was 17, which are thought to be related to the tumour. I was scared and I felt isolated, I had never heard of the disease and the doctors did not have any knowledge of it either.

As the illness only affects an estimated 1 in 30,000 people there is a lack of experience, support and treatment for the condition. It was very difficult to come to terms with knowing I will never get better and there is no cure.’ Now six years on from her diagnosis, Nicola is still impacted by her condition every day. She adds: ‘Some days I suffer from hemiplegic migraines where the symptoms mimic a stroke and I have had to be admitted into hospital. On occasion, I lose vision in my left eye and have to take ibuprofen to be able to see. I experience dizzy spells, light and sound sensitivity and extreme pain every day. Even simple tasks like brushing my hair can leave me in tears from the pain.’

Although the condition is rare, Nicola has found support from online groups and she likes to interact with other people who understand what she is going through. She adds: ‘I managed to find a Facebook support group for my condition which has been extremely helpful as I now have contact with people who share my experiences, it’s nice to have a level of support from people who can fully understand how I feel.’

For Nicola, people are not always understanding of her illness and how it affects her every day. She says: ‘People often comment that I am “too young to be sick” or that I “don’t look sick” which I find really hard to deal with.

I find that the increased use of social media further fuels this view as generally only the best days are posted online and no one sees ‘behind the scenes’ and the worst days where I can’t get out of bed. As I don’t look visibly disabled, I feel that my illness is rarely noticed, which can cause problems when I need to sit down or can’t do as much as people expect of me. I feel like people often assume that because I am young that I am fully able to do everything and shouldn’t be struggling. I feel ashamed at times when I have to take painkillers when I am out as I feel that people are judging me for taking essential tablets.

I have been advised to get a blue badge by my doctor however I have not applied yet as I fear the judgment I would receive for parking in a disabled space when I do not look visibly ill.’

Nicola, like many other people with invisible illnesses, feels that more needs to be done to help people understand that not all disabilities are visible.

How To Get Involved With Metro.Co.Uk’s - You Don't Look Sick series.  
If you have an invisible illness or disability and fancy taking part, please email youdontlooksick@metro.co.uk. You’ll need to be happy to share pictures that show how your condition affects you and have some time to have some pictures taken.

EDITORIAL – The Language of Cancer (And Other Chronic Conditions)  
Following the death of 43-year-old actor Chadwick Boseman with the announcement that he had Colon cancer, the discussions resurfaced on the ‘war like’ language that is often used when discussing not only Cancer but other Chronic medical conditions.  The people with the conditions are described as ‘warriors and heroes’ who are ‘fighting a battle’.

Last year, a Macmillan survey showed that many patients dislike the fighting clichés used to describe cancer – with 44 per cent of respondents disempowered by the phrase “lost their battle”.

These warlike descriptions increase the pressure on patients to act or feel a certain way, with many feeling they’re letting people down if they can’t stay permanently positive, or even worrying they don’t have what it takes to return to health. 

The assumptions about a person’s experience, statements such as ‘you’re so brave’ can upset and anger people. Getting cancer isn’t a choice that is actively made.

YOU DON’T LOOK SICK: ‘I’ve Had Cancer For 12 Years But People Tell Me I’m Lucky’ – Edited from Metro.co.uk Archive Feb 2019    

There are 13.9 million disabled people in the UK – and many of them have an invisible illness. Metro.co.uk publish weekly stories about living with an invisible illness or hidden disability.

Katie Ruane, 34, from London, has been living with the blood cancer, chronic myeloid leukaemia (CML) since 2007. CML affects the production of white blood cells as the bone marrow produces too many myeloid cells – immature cells that don’t work properly. It is a cancer that progresses slowly and it is treated differently to other blood cancers.

Patients with CML do not require intensive intravenous chemotherapy and in Katie’s case, it is managed by taking one chemotherapy tablet each day. However, CML still causes fatigue, pain and weakens the immune system. Katie says there is a lack of understanding about her condition, particularly because she looks well, is able to work, never lost her hair and other when she was first diagnosed, has not been admitted to hospital.

Katie was diagnosed at the age of 22, while she was studying for a degree in History of Art at the University of Edinburgh. She had been experiencing symptoms for around six months but didn’t think it was anything serious. She explains: ‘I had dropped from a size 14-16 to an 8-10 without having to do anything. ‘I also craved certain foods that I have since found out have really good nutrients in them. It’s really quite amazing that I was eating foods to try and help my body without knowing anything was wrong. ‘I also lacked concentration but again I didn’t really think about it. It really kicked in over the Christmas holiday and I just thought it was because I was tired after a busy university term and essays and exams.

Katie was so tired, she struggled to even make an appointment and it was thanks to her flatmate who made her get up and go to an open surgery clinic, that she was eventually diagnosed. She says: ‘I told the doctor that I didn’t feel right, but I didn’t feel ill either and listed my symptoms. ‘The doctor said – and I don’t know to this day if they meant it, or said it so not to worry me – that they didn’t know what was wrong but they did a blood test and told me to come back in a week for the results.

‘I now know that my symptoms were a list of red flags, but at the time I had no idea. I didn’t go to the doctor worried or on edge, and never expected the series of events that happened next.’

That evening, the hospital called and then told her that rather than waiting a week to go back to the doctor, she needed to go to hospital straight away. After a series of phone calls from the hospital, and phone calls home to say that something was wrong, I was eventually given enough information to guess that they thought I had cancer.

Back then, cancer, especially blood cancers, weren’t in the press as much, so I was completely naïve to the potential severity of it all. Ignorance is bliss. ‘I had my own room in the hospital with an on suite, fridge, TV and DVD player so I was pretty happy. I didn’t realise it was because they were so worried about me and I was on a high dependency ward. When I met my consultant, I was told that I was lucky and that the cancer I have wouldn’t kill me. ‘I would just have to take these really clever pills for the rest of my life, but it would be better than it had ever been and I wouldn’t know that anything was wrong with me.

Katie works as a naturopath across London, which means commuting every day. In such a busy city, it can be difficult for people to notice when you might need a seat or some space if you have an invisible illness. Katie appeared in an ad for TFL about the badges for people with invisible conditions  Katie says: ‘A few years ago, through twitter, I found out about the Cancer On Board badge account, which is now a charity and I am a trustee. ‘This badge changed my life and meant that I always got a seat and people were kind and people let me skip the queues in café’s etc. ‘Then when TFL brought out the ‘Please offer me a seat badge’, the two together were like a powerhouse of badges.

Katie is managing her condition and says she is thankful for all the support she has around her. ‘When things were really bad and I spent most of my time on the sofa, Twitter was amazing. I have made some very good friends through that and having that space was very supporting at the time. ‘I’m also an ambassador for the charity Bloodwise. We have a closed Facebook group and that gang is absolutely phenomenal. ‘They listen to me when I am low and miserable and complaining yet again, and never compare it to them and what they are going through or make me feel completely selfish for complaining again. ‘  https://metro.co.uk/2019/02/24/dont-look-sick-ive-cancer-12-years-people-tell-im-lucky-8622001/?ico=more_text_links

DISABILITY RIGHTS UK (DRUK)
We are the leading charity of its kind in the UK. We are run by and for people with lived experience of disability or health conditions.

To contact Disability Rights UK (DR UK) see   www.disabilityrightsuk.org/contact-us

Disability Rights UK (DRUK) – News In Brief

 DFT CONSULTATION – PAVEMENT PARKING OPTIONS FOR CHANGE CONSULTATION 

Last year, the Department for Transport (DfT) completed an exercise to gather evidence on the problems that pavement parking causes, the effectiveness of current legislation, and the case for reform.

To further develop its understanding of the pavement parking problem, the DfT is seeking your views on: 

  • whether its ongoing work (Option 1), to improve the Traffic Regulation Order (TRO) process, under which local authorities can already prohibit pavement parking, is sufficient and proportionate to tackle pavement parking where it is a problem; or if not:
  • which of 2 specific options you prefer. These were identified in the department’s review of the pavement parking problem and echoed by the Transport Committee; are aimed at providing better tools for local authorities. These options, explained in more detail in this consultation document, are: 
    • legislative change to allow local authorities with civil parking enforcement (CPE) powers to enforce against ‘unnecessary obstruction of the pavement’ (Option 2), or:  
    • legislative change to introduce a London-style pavement parking prohibition throughout England (Option 3).
  •  any alternative proposals you may have for managing pavement parking


The DfT recognises that there are pros and cons for each of the options, and your responses on each will inform how this issue should be addressed. How to respond

The consultation period began on 31 August 2020 and will run until 22 November 2020 so ensure that your response reaches us before the closing date. If you would like alternative formats (Braille, audio CD, and so on), contact pavement.parking@dft.gov.uk.

 You may respond via:

 Due to remote working for the foreseeable future, we cannot accept hard copies of responses but please let us know if you are unable to respond by using the survey or by email.

 When responding, state whether you are responding as an individual or representing the views of an organisation. If responding on behalf of a larger organisation, make it clear who the organisation represents and, where applicable, how the views of members were assembled.    https://www.gov.uk/government/consultations/managing-pavement-parking/pavement-parking-options-for-change

 HIGHLIGHTING THE E-SCOOTER CHALLENGE TO SAFETY ON OUR STREETS – Edited from RNIB.org.uk    
 Micromobility vehicles are small mobility vehicles, which are powered partly, or fully, by a motor. For example, e-bikes (electronic bicycles) have already been approved for use, including for dockless bike hire schemes in many areas around the UK. But there are several types of micromobility vehicles which are not currently allowed on public spaces in the UK. These include e-scooters, electric skateboards and self-balancing vehicles.

In our recent travel survey, 81 per cent of respondents to told us it is important, or very important, to be able to walk independently, without a sighted guide. The prospect of an increase in quiet vehicles on our streets is making many worry about the impact on their safety.

 For example, we were told:

  •  “Bicycles and e-scooters, they make very little sound so that you are unable to hear them coming close to you. I have had a few of them knock me down in the past.”
  •  “It could be the end of independent travel for me.”

 E-scooters are extremely difficult for blind or partially sighted people to see and hear. It may not always be obvious to someone riding an e-scooter they are approaching a pedestrian with sight loss. These vehicles will travel at higher speeds more often than pedestrians or pedal bicycles. They can be heavy, so we have serious concerns about the risk of collisions with blind or partially sighted pedestrians.  Where dockless bike schemes exist currently, we have already seen a big increase in bicycles parked on pavements, causing dangerous trip hazards for blind and partially sighted pedestrians.

 Our recommendations                  
 We remain concerned that even with steps taken to reduce the risk of collisions, e-scooters on our streets pose a threat to the confidence and independence of many blind and partially sighted people when walking.

 Our recommendations include:

  •  E-scooters must be restricted to the road and cycleways, and there should be effective enforcement against driving e-scooters on pavements.
  •  Pavements and footways should always be marked with a detectable kerb (with a minimum height of 60mm). Accessible, signal controlled pedestrian crossings (such as pelican crossings), with correctly installed tactile paving, must be included on roads and cycleways.
  • There should be a nationwide public awareness campaign, to educate the public about the reasons why driving (and cycling) on pavements is detrimental to disabled people’s safety, confidence and independence
  •  A requirement for e-scooters to make a recognisable sound should be carefully considered. This would make them much more detectable – and therefore safer – for blind and partially sighted pedestrians.
  •  Maximum speed limits for e-scooters should be implemented and guaranteed. We recommend the maximum speed limit of e-scooter to be as close to average walking speed as possible (4mph), and certainly no more than 12.5mph.
  •  There must be requirements for the safe parking of e-scooters. We believe that the safest and most effective parking scheme will be for them to be parked in specified bays on the road.
  •  Registration, licensing and insurance requirements for e-scooters should be carefully considered.
  •  There should be consultations with local disabled people, including blind and partially sighted people, about decisions on where and how trial rental e-scooter schemes are set up.
  • There should be a full public consultation at the end of the 12 month trial period, on whether e-scooter rental schemes, and private-use e-scooters, should be legalised in the longer-term or permanently.

 Take Action    
Any changes to our streets must be accessible for everyone. Councils are rapidly making changes to our streets to encourage more walking and cycling, so that fewer people rely on public transport. Along with our concerns over e-scooters, we’re worried that the speed of change will make it more difficult for blind and partially sighted people to get out and about.

 Please write to your local councillor, asking them to make sure any local changes are accessible for everyone.

SURREY LIBRARIES: GETTING BACK TO NORMAL              
We have our doors open to everyone, come inside, browse and borrow at 39 libraries.   Public PCs are up and running again, and over the course of this month, we will continue to fully re-open our libraries, with our aim to have all 52 open by October.

We are really keen to welcome you but please check our website for up to date opening times as most of our libraries are operating on temporary opening hours.

Throughout lockdown, our book-buying team have been busy buying new books for our shelves, (over 54,000!) and you will notice all these lovely new books next time you visit. Our online library catalogue features over a million items, and throughout September, you can request any item without paying the normal fee. DVD requests are free too, and we have reduced the hire charge, and increased the loan period to 2 weeks, so a good time to look at our very extensive range.   We extended the return dates on all borrowed items during lockdown, so nothing is due back before at least the 4th September 2020, but after that books will gradually reach their return dates, so please check your loans online, renew anything you still have to finish, and return the rest.     https://arena.surreylibraries.org/web/arena/protected/view-or-renew-my-loans

 You can also return any book to any branch 24/7 using the book drop or return during our opening hours and exchange for something new.   We have a great app you can use to manage your loans, renew and request books, find your nearest library. It's worth checking out if you haven't used it before, and very easy to use. If you prefer to phone, you can use the automated renewal system 24/7 - just call 0300 200 1001 and have your membership number and PIN to hand.

 Getting back to normal, also means that we will gradually be returning to our usual lending patterns. Next week most of our stock will be available for six-week loans - double the usual loan period, and from 28th September we will be back to normal three-week loans for most of our books. We have worked hard to make our libraries safe. To find out more about our measures, please visit: https://www.surreycc.gov.uk/libraries/news-and-events/news/coronavirus#opening

 DMUK’S BAYWATCH CAMPAIGN - CHANGED FORMAT FOR 2020 SURVEY.   
Disabled Motoring UK (DMUK) decided that it was not appropriate to ask shoppers to physically count cars not displaying a Blue Badge which are parked in disabled bays. Instead they ran their survey in August by asking Blue Badge Holders to think back over the last 12 months to consider their general parking experience.

SCAN would like to look at the local issues of Blue Badge Abuse in a similar way.

We are asking Blue Badge Holders to let us know their general parking experience and to answer some more general questions about their experiences at supermarkets and on their everyday journeys.

 Please contact us if you want to participate in this survey.  Email info@spelthorneaccess.org.uk  or text 07853 038933 to register your involvement and a form will be posted to you or visit our website forum where the questions are listed. https://www.spelthorneaccess.org.uk/forum/scan-blue-badge-parking-bay-abuse-survey