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17 December Coalition update

Please see our latest update here.

If you would like to see previous updates, they are all located here.

Merry Christmas everyone! See you in New Year!

Weekly update

Welcome to the weekly update.  This edition includes:

1. Coalition update

2. Physical and Sensory Impairment Strategy survey

3. Flu Vaccination

4. Woking Mind Community Wellbeing Calls service

5. Headway Surrey Zoom Carers support Group

6. Carers of People living with Dementia – dance project

7. Cybercrime Newsletter – Facebook Update

8. Surrey Faith Links newsletter

9. Building Society research


1.  Coalition update

We are recruiting! – We have two brilliant opportunities to join the Coalition staff team, working on collaborative projects with SILC. These roles are available thanks to grant funding from the National Emergencies Trust, Sport England and Active Surrey.

Project Coordinator, part time – 30 hours per week

Physical Activity Navigator, part time – 18 hours per week

We are recruiting for two people, working on fixed term contracts until 30th June 2021. Both roles are home based.

Find out more and apply here: https://surreycoalition.org.uk/practical…/job-vacancies/

The closing date for both roles is Friday 11th December 2020.

IMHN Training Course – The IMHN is offering a two-week training course about representing yourself and community at meetings, running on the 3rd and 11th of December. Please email guy.hill@surreycoalition.org.uk if you wish to join the network and/or book a place.

Craft and Chat – Christmas projects are the main topic at the moment.  This week the group talked about the projects covered in Kirstie’s Christmas Quick and easy Christmas Craft programme on Channel 4 last Sunday.  The group then had their own show and tell which consisted of: Napkin flowers, Knitted Teddies, Crochet Wreaths and Making your own advent Calendar – suggested topics exploring different traditions, listening to Christmas music, poetry and books and a creative activity or puzzle and of course a chocolate to enjoy. Two storage suggestions were a felt Christmas character with pockets and Little card boxes with stickers stacked how you chose.  Next week we will be making different kinds of wreaths. If you want to join us at any time  please do. We meet on Tuesdays at 12.00 noon.

BSL group on Tuesdays – Next week we are looking at a simple sentence using the words we learnt – if you are new don’t worry you’ll catch up! We will also cover animals, numbers and the handshape game.  Join us via the wellbeing hub.  https://virtualwellbeing.healthysurrey.org.uk/find-a-session/

Book Chat – Next week the group will discuss two short stories by Saki.  There are two stories; one about cats and the other about a werewolf.  The group meet every Wednesday at 2.30pm.

Dates for the diary – We have two special dates for your diary related to the social programme which is helping us all to stay connected. 

Monday 7th December – Animal special in the Coalition Café! One of our breakout rooms will involve a guided virtual tour around Cronkshaw Fold Farm which will take 20 minutes or so and this will be followed by 5 minutes of ‘goat therapy’ where we will spend some time with one of the farm goats. 

Thursday 17th December – The big Coalition Christmas themed quiz at 2.30pm.  More information on this next week. 

FoCUS Newsletter – Please see the latest newsletter here which includes the dates and zoom joining details of the December FoCUS meetings.


2.  Physical and Sensory Impairment Strategy Survey

Currently, there is no strategy that sets out Surrey County Council’s commitments to residents with Physical Disabilities, and/or Sensory Impairments.  Adult Social Care is developing a strategy to improve how they provide care and support to adults with physical disabilities and/or sensory impairments.  SCC wish to develop this strategy through co-production with residents who are living with physical disabilities and/or sensory impairments.  This survey is an important part of this co-production and will help them learn from the lived experience of people living with physical disabilities and/or sensory impairments. Surrey Coalition are one of the Stakeholders that have agreed to coproduce this strategy with them. 

Unfortunately,  due to timing SCC have been unable to engage with you to develop this initial survey, however it is hoped that you are able to provide feedback on the draft survey so that this can be incorporated before we launch the survey at the beginning of December.  Please can you send your answers on the document attached to Yasmin.Broome@surreycoalition.org.uk any feedback by Tuesday 1st December.

The Survey when launched will be available in a variety of accessible formats along with an email address and SMS contact number to ensure that all are able to engage with the survey.  SCC recognise that not all members will be able to feedback to the draft survey in this short timeframe and that this will exclude some members who are not ‘online’ however SCC will be working closely with all members to coproduce this strategy moving forward and there will be many opportunities to work with them throughout this process.


3.  Flu Vaccination

Getting the flu vaccination is a great way of protecting yourself from flu this winter, especially for those who are at a greater risk of developing potentially serious complications. It’s also the most effective way of reducing the spread of the virus with those we come into contact with, helping ensure Surrey residents stay fit and well this winter.

The flu vaccination is available every year on the NHS to help us all against the risk of flu and its complications, and for many Surrey residents, it is completely free if you fall into one of the groups below. This year, with COVID-19 in circulation, it’s more important than ever that eligible groups are vaccinated to protect them from flu and the vaccine will be offered to more than 30 million people. The expansion of the flu programme means that many more people will be eligible to receive the free vaccine for the first time, but may not realise this.

Those eligible for a free flu vaccination:

  • Children aged 2-11 years (but not 12 years or older) on 31 August 2020
  • Alternative flu vaccine for children – If a child is at high risk from one or more medical conditions or treatments and can’t have the nasal spray, the child will be offered an alternative flu vaccination by injection.
  • Pregnant women
  • People 65 years and over
  • People aged 50 to 64 – Significant new group will be eligible for the free flu vaccine as people aged 50 to 64 will be invited later in the season for a vaccination. Flu vaccinations may also be available towards the end of the year (from December) to people aged between 50-64. Vaccinations for 50-64 year olds will be subject to supply and priority will be given to those in at-risk groups first.
  • People who are on the shielded patient list and members of their household – Significant new group will be eligible for the free flu vaccine. Household members could pass the flu virus on to those who are shielding, even if they have no symptoms themselves. Many household members do not know they are eligible for a free flu vaccination.
  • People in long-stay residential care homes
  • Carers
  • Health and social care workers
  • People with learning disabilities and their carers
  • People aged six months to under 65 years in clinical risk groups (e.g. living with long-term health conditions such as bronchitis, emphysema, diabetes or asthma)

Action for Carers provide more information on the Surrey Carers flu voucher scheme

There are two new short videos about the importance of the flu vaccination for people with a learning disability now available: 

Please also see Surrey Heartlands CCG Stay Well in Winter web page with these links, here.


4. Woking Mind Community Wellbeing Calls Service

This is a support service for anyone that is struggling with low mood, loneliness and anxiety. Woking Mind can arrange to have a one-off or regular chats about any concerns or troubles at a time that suits. The Woking Mind team can give advice, suggest coping techniques and help people access a wide range of free support service offered by Woking Mind and others in the local area. This includes  their counselling service, peer support groups or walking groups (subject to government guidelines). This service is available to all adults living in Surrey and no referral is required.


5. Headway Surrey Zoom Carers Support Group

Please see below the December dates for Headway Surrey’s Zoom Carers Support Group for families and friends of those with acquired brain injury. If you know of anyone who this would be of benefit to please feel free to forward this email.  Headway Surrey have added a new evening session for those who work during the day.

Upcoming dates for groups this year:

Wednesday 2nd December 7pm-8pm

Wednesday 16th December 2pm-3pm

If you would like to find out more or would like to attend please email chloe@headwaysurrey.org or call 01483 454433

If you are unable to make the groups but find you are in need of some support or advice please do get in touch with Chloe.

The new Headway Surrey Christmas cards are on sale! They have been beautifully designed by one of Headway’s clients. Click HERE  to purchase


6. Carers of People living with Dementia – dance project

Mole Valley Borough Council have received funding for an early onset dementia dance project session with Beatrice Allegrandi, a qualified dance tutor with a specialism in dementia.  Please see the poster attached.  The project can accommodate three people affected by dementia, and their carers, and it would take place in April 2021. 

There is no cost, and it could be of great benefit.  The person would have to be affected by early onset dementia (i.e. be younger than 70), and be a resident in Mole Valley. If you are interested in taking part please email:

beatriceallegrantidancetheatre@gmail.com Or Call or text: 07714 196810 www.beatriceallegranti.com


7. Cybercrime Newsletter – Facebook Update

The Cybercrime Unit at Surrey Police has recently identified a significant increase in Facebook account compromises. In a single week, these accounted for 100% of the reports received by the unit. If you have tried to correspond with a global company about such an incident you will be only too aware how frustrating it can be. And the worst thing is that this is almost entirely preventable – so if you want to secure your social media accounts, please read the newsletter below.


8. Surrey Faith Links Newsletter

Please use the link below.  http://surreyfaithlinks.org.uk/wp-content/uploads/2020/11/SFL-Newsletter-NOVEMBER-2020.pdf


9. Building Society Research

We have been contacted by someone undertaking some research on behalf of a Building Society with the aim of better understanding the needs of customers with vulnerabilities when interacting with financial services. They are looking to speak to someone who is perhaps involved in policy or with an interest in improving services for those with disabilities. The conversation would last approximately 30 minutes at a convenient time to be arranged, and will focus on gaining an understanding of the needs and how they might be met.  Please let Yasmin know if you would like to help with this.

Laundry Lens app review

Laundry Lens for iPhone users

Coalition member Brian has kindly written up an app review for us all to introduce us to an app called Laundry Lens which is available to iPhone users.

What is it and who is it for?

The Laundry Lens app is for anyone who wants to know what the symbols on their clothing labels mean!  It is particularly helpful for those of us with low vision or people who are completely blind to give some help when it comes to washing clothing.

What does the app do? 

The app allows the user to access information on the tags on their clothing to identify the symbols and washing instructions.  As an example, the instruction to avoid tumble drying or to wash on a low heat or to not iron.

How much does it cost?

The app is completely free

How easy is it to use?

The app is simple and straightforward to use.  It is a very handy little app.

You will need to start by finding the app in the app store by searching for ‘laundry lens’ and then downloading it.  Once the app is downloaded from the App Store you simply point your phones camera over the garment label and it quickly scans all the symbols very quickly.  At the bottom of the screen is a blue bar that says instructions and once this is selected it will show you all the symbols on the screen and the instructions of how to wash your clothing.  It is best to use voice-over when using this application as it does not announce straight away.  It can read all the instructions from the clothing label. 

How do I get it?

The link to the app on the app store is here: https://apps.apple.com/gb/app/laundry-lens/id1513767864

What do the screens look like?

Brian has included two screen shots of each stage and they are below:

Screen shot 1

Screen shot 2

What about android users? 

This app is not currently available for android users but there are a few different android alternatives which we would love a member to review for us – please get in touch if you are interested! 

My strategy to surviving long haul covid

My strategy to surviving long haul covid

A Surrey Coalition member has been kind enough to write and share this blog post of her experiences of long-haul covid and her coping tips. Please read below.


Since 8th March I have been home alone, ill and housebound. In my head I planned to finish lots of creative projects when the inevitable lockdown happened – but I hadn’t planned on being home alone – and ill. I’m writing this to share my coping strategies in the hope they may help others, but I will not be sharing lifestyle changes I have made during these last five months because they are specific to my personal symptoms which may be different to others.

Create a supportive network around you

Covid 19 has changed the way whole world interacts but for me it was not just about staying safe (a bit ironic as I was already ill) but I also had to adjust to my significantly reduced energy levels. Maintaining contact with supportive friends, family and neighbours is very important and was made easier by technology. In the early weeks I could only manage short phone calls – with my eyes shut to conserve energy. Whatsapp was great because I could share a photos or text short messages with whole groups of people (less time consuming that individual communication) but my phone memory did get clogged with videos that took energy I didn’t have to delete. After a month or so I moved on to short video calls and then when lockdown began to ease socially distanced garden visits. After five months I up to about one visit a fortnight of just a few hours – it’s great to talk to people face to face for longer than just 5 minutes when they drop off my shopping.

Use your time wisely – pacing

I am lucky I have a GP surgery who believed my long haul covid existed and they treated me as if I had chronic fatigue from week four onwards. They advised me to pace and rest. I am slowly learning about pacing myself and increasing the things I do very gradually. A wise friend told me it’s not just how you are at the time you do an activity but how you feel the next day or even the day after that which tells you if the activity was too much. This approach has helped me in my long-phased return to work. The first day I did one hour, the first week 3 hours in total. I am lucky I have a supportive boss, work for a supportive organisation and that I have a part time role. I am also lucky my work moved on-line due to the pandemic and I can work at home – for now.

Learning from others with the same lived experience – peer support

I was too exhausted to search out others with long haul covid despite knowing peer support had been vital to shaping my Bipolar Self-Management plan. It was only after I’d been ill for over three months and a family member sent me a link to a facebook page that I began to learn from others with ‘long haul covid’. Their advice has surprised me in many positive ways.

  • I have found it to be consistent over time
  • There were lots of little changes I could make to my housebound daily life – cost free to the NHS
  • Advice often originated from health care professionals – you just needed to know which pages of which NHS and health charity websites to look at. While covid 19 is new, post viral conditions are not – although sadly they are often not well understood.
  • How positive the outcomes were – people are improving (although at various speeds) from following their advice.

Devise your own rehab plan – but take care

Through the facebook group I learnt many of the things I was doing just to get through the day with the severe fatigue were hindering my recovery. Initially I wasn’t keen on some suggestions – who wants to take cold showers or cut out cake!  Bit by bit, day by day, I understood more about my ill health from my fellow long haulers and realised I had the power to change my health. I was surprised that even though I was severely fatigued there were changes I could make -being so ill I hadn’t known I had a lifestyle to make changes too! From their tips I have devised my own rehab programme – things to do or not do each day, checking with my GP before implementing changes each step of the way. My weekly plan includes things to eat or drink, ideas of how and when I can rest and appropriate exercises for physical rehab.

Look after your mental health

I know from previous experience that peer support groups can be intense at times so when I joined the long haul covid group – I dipped in and out ensuring there were days at a time when I had a complete time out. I’m lucky – unlike some others with long haul covid poor mental health has not been a symptom of my illness. Ironically getting the virus reduced my anxiety – fear of the unknown had had potential to trigger a hypomanic episode in March. Living with severe fatigue forced me to live in the moment – what do I need to do in my waking moments to eat today. I had no energy to think about the future. As my energy levels increased, I adapted my pre-covid wellbeing strategy of yoga classes and countryside walks to online meditation classes and sitting outside. I also came out of whatsapp groups which became unhelpful reminders of my pre-covid abilities but stayed connected with people that support me. Although I do need to get better at making that phone call when I’m having a tearful moment – at times unsure about how to adapt advice from my peers to my help circumstances and frustrated with the lack of support the NHS has to offer those with long haul covid in my area.

Spend your money wisely

It can be very over-whelming reading all the different things others with long haul covid have spent money on to help themselves recover –  supplements, medical kit, alternative therapies and private consultations. I haven’t bought any of these yet – recovering from previous bipolar episodes has taught me not to panic buy miracle cures.  I’m not saying that I won’t purchase some of the above it’s just I’m not sure yet what is the best thing for me to spend my money on or what to afford in these uncertain times. I also have limited energy both to do my own research and to attend appointments (and need help form others help to travel to appointments). So… I’m waiting to see what feel right to buy and for now that means sitting with an idea for a while, even though I want to be better ASAP. I have, though, changed certain food items I buy – this and other lifestyle changes are showing small but significant improvements and its only two months since I first begun reading tips from my peers.

Value gratitude – I have lots to be thankful for…

..from my personal shoppers bringing food to my door and keeping me alive to my fellow long haulers sharing their knowledge and shaping my recovery. I’ve written ‘I’m lucky’ a lot in this article and I am. My phased return to work is going well and my mental health is generally good. I’m not saying I don’t have down days – I do. My unplanned solitude retreat has been lonely at times and increasingly tearful, but it is a journey and it has become a spiritual one. Deep down I know I will get better and when I don’t know the details of how – I return to the strategies above. Just as the world outside has been changed by covid for me being ‘better’ may be different to the pre-covid me but I will be richer for the experience – I hope.

IMPORTANT INFORMATION FOR YOU – APRIL/MAY 2020

Due to the Coronavirus epidemic, all our meetings, events and activities are running virtually at the moment to safeguard our members, staff and volunteers.  We are offering video conferencing, telephone conference, SMS text relay and email relay into all of our activities.

Staying safe

 

  • To access the Surrey Community helpline for help, please call 0300 200 1008 (Monday to Friday 8am to 6pm), text 07860 053465 (9am to 5pm, Monday to Friday) or Textphone (via text relay) 18001 0300 200 1008 and the Sign Language Video Relay (8am to  6pm, Monday to Friday, and 10am to 2pm at the weekends). Outside these hours a web form is also available and is published on this page.

 

  • For medical information please use NHS 111 online: https://111.nhs.uk/, or call NHS 111 or, in an emergency 999 as you usually would.

 

Staying connected

It is more important than ever that we stay connected, for this reason, we have introduced a weekly community-wide virtual café and a daily ‘walk and talk’.  You can find out about the weekly café here, and about our daily walk and talk here.

For information on all our activity during April and May (and how to join) please see the following pages.

  • For an over-view of April and May see here. If you prefer to see a printable calendar format please check out April, May or June.
  • For joining instructions for DENS see here.
  • For joining instructions for our Special Interest Groups (such as Surrey Vision Action Group and the LTNC) see here.
  • For joining instructions for the Independent Mental Health Network see here.
  • For joining instructions for FoCUS see here.

 

How to access Zoom conferencing

  • For a plain text guide on how to install the zoom app for the first time please see here
  • Easy read instructions for Zoom:

Easy read: what do I need for a video meeting

Easy read: why can’t we have our usual meeting

Easy read what to do just before the video meeting

Easy read using zoom for the first time and downloading the app

If you would like one to one support to get started please just let us know and we will book you a support appointment.

 

 

You can contact staff as usual by email or on their mobile phones or by SMS text or phone to 07563 997 932.  Please note that our office is closed, our staff team are working from home at the present time.   

Please keep in touch with us and please follow all the precautions that are advised.  With all our best wishes, the Surrey Coalition of Disabled People team.