October 2020


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

Disability Rights UK (DRUK) – News In Brief   
To contact Disability Rights UK (DR UK) see www.disabilityrightsuk.org/contact-us

SPELTHORNE ADDED TO GOVERNMENT COVID-19 WATCH LIST – Friday 18 September 2020  
https://www.spelthorne.gov.uk/article/19623/Covid-19-cases   
Due to a continued rise in coronavirus cases, Spelthorne Borough has now been placed on the government’s COVID-19 watch list and is officially an ‘area of concern’. Data shows a sustained rise in coronavirus case numbers in Spelthorne that is out of step with the rest of Surrey, in particular, Staines-upon-Thames, Ashford, Stanwell, Shepperton, Sunbury-on-Thames, Halliford and all of the surrounding areas.

This does not mean there will be a local lockdown or closures at this stage, but it does mean that residents must be extra vigilant and follow government guidelines to stop the spread of coronavirus.

• Follow the rule of 6 – as of Monday 14 September it is illegal to meet up in groups of more than 6 indoors and outdoors

• Hands – wash them frequently for more than 20 seconds – this is the best way of stopping the spread of the virus

• Face – wear face coverings on public transport and in shops unless you are exempt

• Space – stay 2m away from anyone who is not in your household or your bubble

Ruth Hutchinson, Surrey’s Director of Public Health said:  “We are continually monitoring the data across the county, and we need to urgently call on residents across Spelthorne Borough to support us by reining in the spread of coronavirus. Spelthorne now has the highest rates of coronavirus in the South East. I know that people have made a huge effort over the last few months to control its spread, but it’s essential that we don’t get complacent now.

If you have Coronavirus symptoms – a persistent cough, high fever, or a change in smell or taste – then you should book a test by calling 119 or by visiting www.nhs.co.uk/coronavirus. Slots are made available the evening before for morning appointments, and in the morning for afternoon appointments. 

Preventative measures are the best way to avoid local lockdowns.  
Latest Council updates https://www.spelthorne.gov.uk/coronavirus

Weekly data for Surrey, including Districts and Boroughs can be found at: surreycc.gov.uk/covidcases

Surrey’s Local Outbreak Control Plan: https://www.surreycc.gov.uk/people-and-community/emergency-planning-and-community-safety/coronavirus/

Arrange testing through the NHS website: https://www.nhs.uk/conditions/coronavirus-covid-19/

Apply for a coronavirus test on GOV.UK if you are an essential worker, including NHS or social care staff, are asking for tests for the residents and staff of your care home or have a verification code from your employer

BOY, 7, TOLD HE’D NEVER WALK CLIMBS BRITAIN’S TALLEST MOUNTAIN – Edited from Metro.co.uk  
Caeden Thomson, from Corby, Northamptonshire, was born 12 weeks premature and his parents were told he would never be able to walk, sit or talk. Mum Lisa Thomson said Caeden’s ‘life began with huge struggle, stress and a feeling of the unknown’. But after undergoing intense treatments such as physiotherapy and with the help of supportive techniques like splints, she said her son is now a ‘very happy boy’ and ‘tries his very best not to let his disability stop him’.

The young boy said he felt ‘so lucky’ for all the support he has received, that he wanted to give something back to his local NHS trust and disability equality charity, Scope. He decided he would raise £8,000 by climbing Ben Nevis, in the Highlands. After completing the 4,411ft ascent to the top of the mountain Caeden has surpassed his goal by raising more than £13,000 on a Just Giving page.

Following the trek, Caeden said: ‘My body hurts a lot but I’m OK. It was really, really hard”. Following the 13-hour hike, ‘super proud’ mum Lisa called her son an ‘absolute legend’, adding that he deserves a medal for his efforts. She said: ‘It was such a massive challenge and much, much harder than any of us expected. ‘There were many hard times along the way – from three-quarters of the way up the pathway is just massive boulders and very hard to climb, and even at the top we didn’t think he would make it down.  
https://metro.co.uk/2020/08/31/boy-7-told-never-walk-climbs-britains-tallest-mountain-13201437/?ito=cbshare

Disability Rights UK (DRUK) – News In Brief  

DEAF GIRL, 8, ‘TURNED AWAY’ FOR NOT WEARING MASK AFTER SHOP STAFF ‘DEMANDED PROOF’ Edited from Metro.co.uk  
Julie Muller, 41, and daughter, Sadie-Grace, 8, are exempt from wearing face-coverings as they lip-read to communicate. Ms Muller said she was stopped at the entrance by a worker who asked where her mask was. ‘I said: “I’m exempt because my daughter’s deaf and she needs to be able to read my lips.” When asked for proof of the disability, Julie replied: ‘You can have a look on her head.’ She added: ‘I embarrassed my daughter. I showed her the implants on her head.’ But the employee allegedly replied: ‘That’s not good enough, I need paper proof’.

A shop manager also initially refused to give Julie and Sadie access – before allowing them in but warning they would not be served without a mask ‘due to company policy’. Cotswold Outdoor has claimed Julie and Sadie-Grace were ‘welcomed’ inside after Julie explained why she was unable to wear a mask. The company confirmed staff were unable to ‘provide any full close-contact services’. However, mum-of-three Julie has made a complaint and has vowed to ‘never set foot back in that shop’.

She said: ‘What was heart breaking was Sadie asked her dad, “Am I not allowed in the shops because I’m deaf?” I had to explain it was not because she’s deaf, it’s because I need the mask.’

Cotswold Outdoor said in a statement it has stopped asking customers for proof of exemption. It is now following up the incident ‘as a priority’. A company spokesperson insisted it had been ‘conscientious’ in implementing guidance on facemasks as ‘sensitively as possible’. They said: ‘With regard to this particular situation my understanding is that the customer, but not her daughter, was initially asked to wear a face covering when entering our Newcastle store. ‘As soon as the store manager was made aware that the customer needed her daughter to be able to see her mouth to lip read, the manager welcomed the customers into the store without requiring them to wear a face covering. ‘However, he did explain that we wouldn’t be able to provide them with any full close-contact services such as boot fitting, at that time.’  
https://metro.co.uk/2020/08/29/deaf-girl-turned-away-not-wearing-mask-shop-staff-demanded-proof-13196087/?ito=cbshare

LIP-READING SISTERS ABUSED FOR LIFTING MASK ON TRAIN – edited from BBC.co.uk  
16-year-old Saule Pakenaite, who lifted her so that her sister Karolina, 24 could read her lips, was verbally abused by a train passenger on the Liverpool to Southport service in July.  Karolina is registered as deafblind and had her guide dog with her.

Mobile footage that was released by Sense shows the woman refusing to accept the sisters’ explanation that Ms Pakenaite is hard of hearing and visually impaired. She goes on to question whether she is actually disabled after she is able to respond to her comments.  Saule Pakenaite can be heard explaining that her sister, who has Usher syndrome, which causes  hearing los and and an eye disorder leading to night blindness and loss of peripheral vision/ Karoline draws attention to her guide dog and says ‘I’m hard of hearing ……. And I’m visually impaired’ The woman continues to berate the pair  before another passenger intervenes and the video clip ends

Speaking after the confrontation on 16 July, Karolina Pakenaite said: “I can no longer stay silent about this as I keep experiencing attacks and hearing similar experiences from others too.

“It’s taking an effect on my mental health.  Please respect people individually – ask us, listen, discuss…  But harassment, name calling or any type of abuse or aggression will never be OK.”

Face coverings are mandatory on public transport in England but exemptions apply to certain groups.  They include people who provide support to those with disabilities who may rely on lip reading, facial expressions and clear sound for communication.  Exemption cards can be printed from the government’s website but those affected are not expected to carry proof.

Sense chief executive Richard Kramer said the sisters’ experience “wasn’t a one-off – a number of people have been challenged for not wearing a mask”. He said the organisation had received “lots” of similar accounts, which could reinforce any anxiety felt about leaving the home, or lead to further isolation.

“We welcome the government’s introduction of ‘exemption cards’, but more must be done to raise public awareness of who is exempt from wearing face coverings, so the public are on board and disabled people feel supported,” he said.  
https://www.bbc.co.uk/news/uk-england-merseyside-53539468

POST-LOCKDOWN WORKING LIFE BRINGS NEW CHALLENGES FOR DISABLED WORKERS - Edited article from Thomson Reuters Foundation, the charitable arm of Thomson Reuters, that covers the lives of people around the world who struggle to live freely or fairly.  
Returning to work after lockdown is proving especially challenging for staff at Britain’s Bravest Manufacturing Company (BBMC), most of whom have disabilities or are military veterans.

At the company’s two factories in England, production lines have been reconfigured to allow social distancing and employees are being kitted out with protective gear suitable for those with special requirements such as gloves for amputees.

“For some of these people it will be a huge change and means the world that they knew and were used to has completely altered,” said Kate Bull, managing director of the company, which produces signs and wooden pallets.  “The investment of time to get those people to feel safe and manage the change... has been quite intensive,” she told the Thomson Reuters Foundation.

BBMC is one of hundreds of social enterprises – businesses that aim to do good - worldwide that strive to build more inclusive workforces by hiring people with disabilities who may otherwise have limited job prospects.  As the coronavirus crisis causes millions of job losses globally and leaves many companies struggling to stay afloat, labour experts fear it could reverse progress on workers’ rights, particularly for vulnerable groups such as the disabled.

“It’s a huge blow for disabled people generally because it’s hard enough to find jobs in normal times but under these circumstances it is hard for everybody – but doubly so for disabled candidates,” said Jane Hatton, CEO of Evenbreak, a recruitment social enterprise for disabled workers.  While British companies have got better at hiring more diverse workforces to include people with disabilities, there is a risk of that taking a backseat during the crisis, she said. “Traditionally employers will look for non-disabled staff before they will look for disabled staff because they perceive them to be higher risk or more expensive, which is not the case,” she said.

Before the virus, skills shortages in areas such as social care, hospitality and retail meant many employers were hiring, giving Evenbreak’s 24,000 active candidates an advantage.  But as the crisis causes recruitment freezes and higher unemployment, job adverts on Evenbreak have fallen from about 2,000 a month to 500 or 600, though clients have said they hope to start recruiting again.  Campaigners also fear disabled workers could become less visible as a result of the crisis.   https://news.trust.org/item/20200707131150-r2ta0

Stay Connected With Surrey Coalition Of Disabled People -    
Virtual Social Schedule    
Monday - Virtual café 11.00 am – 12pm Join by zoom:  
Monday - Move & Chat - 2.30 pm – 3.00pm Join by zoom:  
Tuesday - Crafting Chat 2.30 pm – 3pm Join by zoom:  
Wednesday - Book Chat 2.30 pm – 3pm Join by zoom:  
Thursday - Weekly Quiz 2.30 pm – 3pm Join by zoom:  
Friday - Fitness & Food Chat 2.30 pm – 3pm Join by zoom:  

If you know someone who would like to join please encourage them to get in touch with us and we will provide them with what they need.  They can email us on bookings@surreycoalition.org.uk or by our main office details below.   

All our groups run on zoom, you will need to download zoom before you join in and you can do that here: https://zoom.us/support/download from a Windows PC, android smartphone or tablet.  

You can get our step-by-step instructions here: https://surreycoalition.org.uk/events/.

Surrey Coalition of Disabled People, 01483 456 558 or SMS text 07563 997 932 Email info@surreycoalition.org.uk,

SURREY LIBRARIES REOPENING NEWS AND UPDATES  
45 libraries are now open for public access allowing customers to browse, borrow, return items, use the computers and collect their requests (reservations).

Customers can also continue to make use of the new Ready Reads service https://www.surreycc.gov.uk/libraries/news-and-events/news/coronavirus/ready-reads where the library team selects books based on individual preferences.

Which services are paused at this time?  
Bus Passes and Blue Badges.  
Use of study spaces, seating areas and meeting rooms.
Newspapers.
Face to face events and Digital Buddy sessions.

Safety and social distancing measures  
We are introducing comprehensive safety and social distancing measures. These will include:

  • face coverings - following Government updates, is now mandatory for customers to wear a face covering when visiting the library, so please help to keep each other safe by adhering to this. If you are one of our customers who are exempt from wearing a face covering, we will be very happy to welcome you as normal.
  • rigorous cleaning in our libraries and hand sanitiser provided at library entrances.
  • limiting the number of customers in our libraries at any one time.
  • clear signs asking you to observe social distancing
  • protective screens at counters where you need to interact with our staff
  • separating returned items from the rest of the stock for 72 hours in line with Public Health England advice
  • reducing the amount of contact needed. Services which require close contact such as event and activities, use of public PCs and bus passes will be temporarily paused or moved online.
  • introducing a new self-issue system giving you the option to borrow items via your smart phone in the libraries that are open.  https://www.surreycc.gov.uk/libraries/news-and-events/news/coronavirus#safety

Opening Times for Spelthorne Libraries – for other areas see  https://www.surreycc.gov.uk/libraries/news-and-events/news/coronavirus#opening 

Ashford 10am until 4pm - Tuesday to Saturday  
Shepperton 10am until 1pm - Tuesday, Thursday, Friday Saturday  
Staines  10am until 4pm - Monday to Saturday  
Stanwell 10am until 1pm - Tuesday, Thursday, Friday Saturday  
Sunbury 10am until 2pm -Tuesday to Saturday

YOU DON’T LOOK SICK: ‘My Skin Condition Causes A Lot Of Pain But I Gave Up My Blue Badge Because Of Abuse’ – Edited from Metro.co.uk  Archive  
There are 13.9 million disabled people in the UK, but for many of them, you would have no idea anything is wrong. Lots of people suffer from debilitating symptoms and daily struggles but when they are out in public, they are challenged when they use priority seats or disabled parking. They’re told ‘but you don’t look sick’ because they don’t use a wheelchair or something people associate with disability.   This series looks at what it’s really like to live with a disability or illness that no one can see, discussing the symptoms that affect their lives every day and how they are treated when they are out in public.

Leanne Yewer, 31, from Addlestone, Surrey has Recessive Dystrophic Epidermolysis Bullosa Inversa. Her condition causes painful blisters in patches over her body, including inside her mouth and throat. Although some people have blisters across their face and hands, the placement of Leanne’s mean that when she is wearing clothes, most people have no idea about her condition. It has also caused osteopenia, a weakening of the bones, and means that she has frequent muscle and bone pain.

Leanne explains: ’I get a lot of people most days saying they don’t believe I am ill or that I don’t need help. ‘There are no signs there is anything wrong. ‘I actually had an old lady scream at me and tell me I didn’t look ill on the way to a medical appointment. ‘We were parked in a disabled bay waiting for my appointment and we got there early as it is first come first served with the spaces. ‘I showed them it was my badge and said I wouldn’t have it if I don’t need it but they were not listening. ‘Since then I have actually given up my badge and I make myself walk now no matter how much it hurts. ‘I still have my disabled card with me just in case I need it. ‘I am very lucky in the sense that my EB is inside as this is much easier to cover up however this doesn’t mean I am not in pain.’

She was diagnosed at birth as doctors noticed her foot was damaged and was missing skin. She explains: ‘A doctor in the room believed he knew what it was so went home and researched, I was diagnosed the following day. ‘My sister actually got diagnosed shortly after as she had the same symptoms but had gone four and half years with no help.

‘When the blisters in my throat are inflamed, I can go a couple of weeks without solid food due to the razor feeling.’ Leanne now has had seven operations in six years on her throat where they use a balloon and stretch her skin which means even though her blisters are inflamed, she is still able to have a small amount of food.

‘I have started to learn to accept it and talk about it more as I’ve got older. ‘I wrote an article for the DEBRA charity website https://www.debra.org.uk/ to help raise awareness and I began to share this with everyone.  ‘I had family members message me because they had never realised what I was dealing with.’ Although she often feels ill, Leanne tries to have a positive outlook and doesn’t want her condition to hold her back. ‘I tend to push my boundaries a lot and don’t listen to my body when I feel ill because I won’t let my EB control my life. However, this has a knock-on effect and can wipe me out for days after,’ she adds. Leanne tries to manage her condition and says she receives a lot of support from her friends and family.

‘My mum has always been at my side throughout the whole process. ‘She is always the face I see or the hand I feel as I come round from my operation and it always helps to cope with it and helps me to understand I am safe. ‘I have been with my partner for nearly 10 years now and he is so supportive. He helps encourage me to speak out and knows all my ‘secret’ signs of when I am in pain and need a time out without making it obvious to anyone. ‘I tend to choke a lot with my foods and normally people wouldn’t realise I am choking however I have exercises I do to get rid of whatever is stuck and he knows what these are so will nod or check on me without anyone seeing it.

There are weekends away set up by the DEBRA charity for people who have the same condition where we can all feel welcome and safe to talk about how we feel and how we cope with things. ‘Since attending these I have made some good friends who we now contact through social media and we have private groups set up where we can discuss everything, which is incredible.  
https://metro.co.uk/2019/03/03/you-dont-look-sick-my-skin-condition-causes-a-lot-of-pain-but-i-gave-up-my-blue-badge-because-of-abuse-8330101/

ASPH PHYSIO-THERAPY TEAM NOMINATED FOR NHS PARLIAMENTARY AWARD  
The Musculoskeletal (MSK) Physiotherapy and Hand Therapy Team at Ashford and St Peter’s Hospitals NHS Foundation Trust has been nominated for the Future NHS Award at the NHS Parliamentary Awards.

Dr Ben Spencer, MP for Runnymede and Weybridge, has nominated the team. He said: “I am delighted to submit this nomination for the NHS Parliamentary Awards. The innovative approach taken by the Musculoskeletal Physiotherapy and Hand Therapy Teams has not only provided improved care options for local residents despite Covid restrictions, but it also has the ability to bring real improvements to treatment and support across the NHS. 

Leon Palmer-Wilson, Acting Clinical Co-Lead for MSK Physiotherapy at the Trust, said:  “Despite the demands of COVID-19, the teams operated at full capacity and supported colleagues throughout the Trust, offering 1500 new monthly appointments. Their virtual physiotherapy skills were utilised through treating patients from community stroke and orthopaedic teams, whose care was affected by the reduction of services during lockdown. With supporting vulnerable and elderly patients remotely a clear priority, the teams also liaised with families to assist with their technological needs and introduced new virtual classes specifically for patients at risk of general deconditioning due to shielding.

Patients and staff have acknowledged the benefits of virtual working, which include: no travel; no parking costs; decreased risk of exposure to COVID-19; shorter waiting times; environmentally friendly.

The Future NHS Award is one of the 10 categories at the NHS Parliamentary Awards. The awards recognise those working for and with the NHS, who go above and beyond to make the NHS a better service. MPs can nominate one individual or team for each of the categories.

The winners will be presented with their awards in Parliament on 7 July 2021. https://www.ashfordstpeters.nhs.uk/latest-news/2559-physiotherapy-team-nominated-for-nhs-parliamentary-award

NEW CAR PARK AT ST PETER’S HOSPITAL  
The new car park at St Peter’s Hospitals NHS Foundation Trust has opened with 694 parking spaces that includes 8 charging stations for electric vehicles and 36 Blue Badge bays.  Parking is spread over 7 half floors (0.5 to 3.5) and connects directly to the hospital’s main entrance at level 2. The new car park has been built on the footprint of the hospital’s existing parking area. 

There is CCTV, coloured way-finding signage and an intelligent LED lighting system, all aimed at making the car park a safe and secure environment.  The lighting system has also been designed to minimise light pollution to adjacent woodlands and headlight shields help reduce disturbance to buildings and wildlife habitats nearby.

SCAN Comments:  
Paragraph 5.60 of the Department Of Health's 'Health Technical Memorandum 07-03 NHS car-parking management: environment and sustainability' states that : "Although there is no statutory requirement under the Equality Act 2010 to make provision for a certain number of disabled parking bays within a car-park, local planning conditions often stipulate a required number, and this averages around 4–6% of car-park capacity. However, NHS organisations should increase this figure, as it is likely that a higher percentage of disabled users will attend an NHS site compared with other site."

It appears that the new car park at St Peter's Hospital provides just over 5% of the parking spaces for Blue Badge holders.  On the whole the information suggests that Blue Badge holders will have a difficult time in finding suitable parking spaces even if there are other designated spaces at different locations on the hospital grounds.  
https://www.spelthorneaccess.org.uk/forum/new-multi-level-car-park-at-st-peter-s-hospital-chertsey

Surrey Adult Social Care Team Current Special Bulletin

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.

Our key decisions are made through our members who elect the Board of Trustees: and by our Senior Management Team.

We work with our members to influence national policy on independent living, benefits, education, employment, transport, human rights and other issues – shaping policy through direct experience and expertise.

We also work with our local individual and organisation members to empower and to influence local policy and services.

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

Disability Rights UK (DRUK) – News In Brief

THE SUNBURY GALLERY CAFÉ    
is open daily from 11:00 to 15:00 Tuesday to Sunday CLOSED MONDAYS.

Serving a selection of our ‘Signature’ homemade cakes, scones, cream teas, sandwiches and soup as well as teas, coffees, soft drinks, beers & wine.

Initially, we will be using environmentally friendly and recyclable packaging and will only be able to accept contactless card or mobile payments.  We want to personally assure you that your welfare is our highest priority so will be following rigorous hygiene procedures as well as the latest published guidelines on social distancing.

The Sunbury Gallery has full wheelchair access and a disabled toilet. A wheelchair is also available on request. Please let us know if you require any help before your visit.  For visitors with visual or hearing impairments, we offer a tactile guide to the embroidery and an audio guide and transcript.  In addition, a tactile map of the Walled Garden is also available on request.

Parking is available at The Walled Garden and also at the Orchard Meadow car park which is accessed from The Avenue. A footpath across the top of the meadow connects with the Walled Garden.  The first hour is free if your visit is short, otherwise it is £2.00 all day. 

If you would like to speak to someone concerning your visit, please call 01932 788101 or email info@sunburygallery.org. Visit our web site for further details  https://www.sunburygallery.org/

YOU DON’T LOOK SICK: ‘I Have MS But I Get Told To Give Up My Train Seat’ - Edited from an archived series published in Metro.co.uk  
There are 13.9 million disabled people in the UK, but for many of them, you would have no idea anything is wrong. They’re told ‘but you don’t look sick’ because they don’t use a wheelchair or something people associate with disability.

This series is a look at what it’s really like to live with a disability or illness that no one can see, discussing the symptoms that affect their lives every day and how they are treated when they are out in public.

Amelia Ayres, 24, from Plymouth, has Relapsing, Remitting, Multiple Sclerosis, a condition that can affect the brain and/or spinal cord, causing a wide range of potential symptoms, including problems with vision, arm or leg movement, sensation or balance. It is an autoimmune condition which means that something has gone wrong and the body starts to attack the brain and the spinal cord. It’s a lifelong condition that can sometimes cause serious disability, although it can occasionally be mild.

Although some days, Amelia is barely able to move out of bed, she is often challenged when she is out and has been asked to move from priority seats on the train or challenged over using a disabled parking space because she doesn’t ‘look’ disabled. She explains: ‘I look ‘normal’ and find it incredibly frustrating that nobody can see my symptoms. I was sat in a disabled seat on a train when a tall man looked at me and said “I need you to move so I can sit there as I have long legs.” ‘My mum looked at the man and said “there’s a disabled sign, my daughter has MS and is disabled” and he walked away tutting. After that I got my MS card out and put it on the table in case anyone else questioned my right to sit there. I was so angry. ‘I’ve had my provisional license taken away (due to the medication I started out on), so my mum drives me and we use my blue badge. Nearly every time we go to the supermarket people will look questioningly at me because I look ‘fine’. The same happens when I use a disabled toilet with my radar key.’

Amelia was diagnosed in 2014, after almost a year of experiencing symptoms and she has developed Trigeminal Neuralgia (facial nerve pain) and Graves’ Disease (a thyroid disorder) as a result of treatment. She explains: ‘In March 2013 I started getting really severe headaches. My family thought I wasn’t drinking enough water and the GP was trying to rule out sinus trouble. In November 2013, I was sent for an MRI – we had to wait until the following January 2014 for the results. ‘The doctor said I needed to see him straight away as he’d found something on my brain. I was so nervous, I thought it was going to be a brain tumour. ‘When I saw the doctor he said ‘We’ve found lesions on your brain. I think you have something called MS’. ‘I didn’t know what that was.

He explained a little bit, what it means etc. and said I needed to see a neurologist. At the time I didn’t know what to ask as I was shocked.’ A week later, Amelia saw a neurologist and was told she needed to start treatment immediately. She explains: ‘He said: “I’d advise you nip home and get some things as I don’t know how long you’ll be in hospital for.”  

‘The neurologist said he wanted to give me an aggressive form of chemo as the MS had done a lot of damage – the only question I asked was ‘will I lose my hair?’ The answer was luckily no. ‘My mum wanted me to think about it, but I said yes straight away so I couldn’t change my mind.’

Chemotherapy is used in people with MS, as the immune system attacks the myelin sheath around the nerves of the central nervous system. Chemotherapy drugs are used to kill white blood cells, which are part of this attack. This may slow down or stop disease activity in MS.

The change in her lifestyle over the last few years has been something Amelia has found difficult. ‘I’m fed up of feeling like this, it’s so irritating. At 24 years old I want to be normal. I wish that I could go back to work. I miss it so much – the responsibility and getting up and doing something with my day,’ she adds.

When she does feel well, she tries to embrace life and pushes herself as much as she can. She says: ‘Good days are few and far between, but if I can get up and go for a short walk with my mum and sister around the park I see that as a win. ‘It’s incredible to have a couple of hours symptom-free. The problem is, when I feel like that I tend to jinx myself and then feel worse than ever after.

‘When I’m feeling OK, I don’t take being able to go out for granted. Having the energy to jump on the bus for a short journey and see a friend for a coffee is a bonus. ‘Living with MS means I’m continually having to pace myself and there’s no way of preparing yourself for the daily hurdles it throws at you; I’ve woken up with a burning pain in my eye which lasted for a week, to recently not being able to cross my fingers on my right hand for a few hours. ‘I do, however, like to set myself challenges.

In July 2018 I set up a Facebook group called MS UK for people with MS, people awaiting diagnosis and family members affected by the condition. ‘I love administering the group and there’s already more than 2.6k members signed up. ‘People have said they didn’t realise how badly MS has affected me and that it can be such a debilitating condition. ‘I wish people weren’t so ignorant.

If they were more open minded they would start to understand that some disabilities mean you have invisible symptoms.’  
https://metro.co.uk/2019/02/17/you-dont-look-sick-i-have-ms-but-i-get-told-to-give-up-my-train-seat-8356954/?ico=more_text_links

SCAN’s BLUE BADGE PARKING BAY ABUSE SURVEY  
We are asking shoppers, who are Blue Bade Holders, to think back over the last 12 months to consider their general parking experience and answer some questions about their experiences at supermarkets and on their other journeys where they have needed to access a parking space designated for Blue Badge Holders

Please contact us if you wish to help us with this survey.  Email info@spelthorneaccess.org.uk  or text 07853 038933 to register your interest or visit our website forum where the questions are listed. https://www.spelthorneaccess.org.uk/forum/scan-blue-badge-parking-bay-abuse-survey