NOTE FROM THE EDITOR
For most of the 18 years that I was the full time ‘unpaid’ Carer for my disabled husband, whenever I ‘met’ other ‘unpaid’ Carers through ‘online’ discussion groups etc most were very ‘vocal’ about their concerns that employees in the care sector were also referred to as carers, especially as it was often perceived that they (unpaid Carers) had the same employment status.

Eventually the Care sector began to adopt new titles for their care staff such as Care Workers or Care Givers to create a distinction between the two groups.

People working in the care sector are governed by rules and regulations for every aspect of their working environment. They have regular holidays knowing that their employer has arranged for colleagues to take over their clients.

However, there is little comparable governance for ‘unpaid’ Carers. Any holidays will only be possible if suitable accommodation can be found and may even be more expensive and time consuming than staying ‘at home’.

Some people might? be lucky enough to claim an allowance of £1.85 an hour if they provide care for at least 35 hours a week but not if they are already receiving their State Pension or certain other benefits that are also classified as ‘Income Replacement Benefits’. Don’t get me started on that subject!!!!

In 2017 the Office of National Statistics (ONS) calculated that ‘unpaid’ Carers saved the economy £56.9 billion a year!!! However, in 2015 a report was published by Carers UK and the University of Sheffield that put the annual figure at £132 billion

PLANNING FOR CARER’S WEEK: 10th to 16thJUNE 2019
This year a number of local organisations are working together to help ‘get carers connected in Surrey’. Surrey County Council, Action for Carers Surrey, clinical commissioning groups, Surrey and Borders Partnership NHS Foundation Trust and the Diocese of Guildford are the key partners using joint resources and channels to maximise and amplify communications to unidentified, and existing, carers to help them access information and support.

However, support for this campaign is open to all local organisations who are encouraged to get involved. If you need any more information, would like to run your own event or need promotional material, please contact: elise.edmonds@surreycc.gov.uk.

KEW GARDENS – HEALTH WALK­S FOR PEOPLE LIVING WITH DEMENTIA
Third Tuesday of each month from 10.30am. Limited to 20 people per tour, so registering is essential.
www.kew.org/kew-gardens/whats-on/health-walks-for-people-living-with-dementia

KEW GARDEN - BRITISH SIGN LANGUAGE (BSL) TOURS
First Sunday of each month from 11.30am. Tours are limited to 15 people per tour, so registering is essential.
www.kew.org/kew-gardens/whats-on/monthly-british-sign-language-tours

KEW GARDEN - SENSORY GUIDED WALKING TOURS FOR VISITORS WITH SIGHT LOSS AND THEIR CARERS
Second Sunday of every month (from 10 February 2019 to 10 November 2019) at 11.30am.
www.kew.org/kew-gardens/whats-on/sensory-guided-walking-tours-for-visitors-with-sight-loss-and-their-carers

All Walks: Meet at the Guides' desk, Victoria Gate Plaza
These walks are free, and free entry to the Gardens is included
Register in advance by emailing discovery@kew.org or phoning 020 8332 5643.

AVOID BEING RIPPED OFF ON YOUR DOORSTEP
You have a higher risk of dealing with an unreputable trader who charges extortionate amounts for a poor job if you deal with someone who's looking for work by going from door to door.

Rogue traders are generally traders who cold call and will then exploit residents by convincing them to pay for shoddy or incomplete repair work, charging extortionate fees for their services, or threatening residents who do not comply.

Buckinghamshire and Surrey Trading Standards advises to always say no to doorstep callers, no matter how good the deal sounds. There is lots of advice on the Trading Standards website to help residents find and use reputable traders, including:

  • Using approved trader schemes like Checkatrade or Trustmark.
  • Asking friends and family to recommend a trader and getting different quotes.
  • Ensuring you have a timeline and the trader's name, address and phone number.
  • Not paying for work in advance and paying by credit card or cheque rather than cash. Never go with a trader to the bank or building society in order to withdraw money.

Please also be aware that if you employ a trader to dispose of waste who isn't a registered waste carrier, you could be liable for a fine of up to £400. To avoid prosecution, check if they are registered by using the Environment Agency's online checker https://environment.data.gov.uk/public-register/view/search-waste-carriers-brokers remember to ask how and where they intend to dispose of waste, and get a receipt.

For more advice, links to Check a trade and Trustmark, and how to get a 'no cold calling' sticker for your front door, visit the Trading Standards website. https://www.surreycc.gov.uk/business-and-consumers/trading-standards/finding-a-trader/approved-traders

SPELTHORNE PARASPORTS CLUB is a club for young people aged 5 years - 25year from all local Boroughs with various learning or physical disabilities. Located in Spelthorne Leisure Centre on 1st and 3rd Saturdays of each month mornings 10:15am - 11:45am during Term times.

The Club was formed with the help of Spelthorne Council in 2006 and whilst the club is independent it has close ties with the council through its leisure services team.

We have various sports to try every week such as Basketball, Badminton, Boccia, Football, Short Tennis, Indoor Cricket and many others.

Cost: £4 a session (£2 for siblings) payable on the day. Every 4th session free! Come and try 1st taster session free!

www.surreycommunity.info/spelthorneparasportsclub/schedule/  

PRINCESS ALICE HOSPICE BEREAVEMENT CAFÉS IN THE COMMUNITY
Bereavement support has always been part of Princess Alice Hospice vision, but for the past two years it has formed an important part of our strategy to reach more people in the community. To that end, we have been supporting local faith and community groups to set up and run Bereavement Cafés and 12 Cafés have been set up or in the process of starting soon.

We have provided each Café with free two-day training on supporting bereaved people and setting up a Bereavement Café, and we’ve also offered each group regular support during the first year.

If you would like to be part of our Bereavement Café project and are interested in setting up your own Bereavement Café, please contact Sally Holland on 01372 461996 or sallyholland@pah.org.uk to enrol on our next training days, which are on Saturday 4th May and Saturday 18th May from 9.00 am to 4.30 pm here at Princess Alice Hospice. There are further dates throughout the year.

SURREY COUNTY COUNCIL LEAVING COUNTY HALL
Surrey County Council (SCC) is currently based in the magnificent County Hall in Kingston-upon-Thames, which actually isn't within Surrey at all. The borders of Surrey were altered in 1965 creating Greater London but SCC remained at County Hall. That all looks set to change now as the Council begins its transformation journey.

Part of the transformation process is about moving closer to residents and relocating the 1,500 people who currently work in County Hall by 2020. An agent is being recruited to market the building and alternative locations for staff are being looked at, including relocating to other SCC owned buildings. There are also plans to look at how staff can be better equipped to work from home, in non-office locations and other council offices across the county.

The search is on to find the best locations to enable us to serve residents effectively - we'll keep you posted.

SOCIAL GROUP ‘CAFÉ CULTURE’ AT NOSTRANO LOUNGE IN STAINES
Anyone aged 50+ can attend, no booking required. Refreshments can be purchased and there is a drinks loyalty scheme.

The meetings held between 3pm – 5pm at the Nostrano Lounge, 55 High Street, Staines, TW18 4QH. If you would like to find out more about Café Culture please call 01483 503414.

The Benwell Centre, Sunbury offers a range of activities to help keep the body and mind active including exercise, bingo, line dancing, arts and crafts.

Please come along and visit our friendly centre. To contact the centre, call 01932 784232 or email benwell.centre@spelthorne.gov.uk

The Fordbridge Centre, Ashford offers a wide range of activities to help keep the body and mind active plus hairdressing, day trips and much more. We also offer two holidays a year, one in the spring and one in the autumn.

Please come along and visit our friendly Centre to find out more. To contact the centre, call 01784 243880 or email fordbridgecentre@spelthorne.gov.uk

Greeno Centre, Shepperton has a range of activities on offer including exercise classes, line dancing, massage, support groups, arts and crafts.

To contact the centre, call 01932 246173 or email greeno.centre@spelthorne.gov.uk

Staines Community Centre is a light and airy two-storey building with a cafe on the ground floor. We offer a wide range of activities to help keep the body and mind active plus day trips, hairdressing and chiropody.

To contact the centre, call 01784 463073 or email staines.community.centre@spelthorne.gov.uk

DEMENTIA ACTION WEEK, 20TH – 26TH MAY 2019
Dementia Action Week 2019. Dementia Action Week (20 - 26 May 2019) unites people, workplaces, schools and communities to take action and improve the lives of people living with dementia. ...

Having dementia shouldn't mean an isolated life. https://www.alzheimers.org.uk/get-involved/dementia-action-week

SHEPPERTON DEMENTIA ACTION GROUP
An afternoon event on the Wednesday 22nd May at the Shepperton Village Hall during the Dementia Action Week for the Alzheimer’s Society in order to raise awareness and stimulate action at national and local levels.

It will be an opportunity for the local residents to drop in and speak to representatives of agencies engaged in local dementia support actions and advice.

There’s no charge! It’s a matter of having a table and space available for a display / to set up your stall. The timetable will be as follows: 

  • Hall open to organisations to set up from 1pm
  • Hall opens to the public at 1:30pm
  • Organisations market place 1:30 – 3pm
  • Refreshments available from 2:30 to 4pm
  • Dementia Friends training session in the hall from 3pm till 4pm
  • Packing up 4pm

Representation on the Shepperton Dementia Action Group includes Action for Carers, CAMEO, Spelthorne Dementia Support (Purple Angels), Spelthorne Borough Council, Shepperton Residents Association, Home Instead, and The Burlington Care Home.

Contact Nigel Drury by the 4th May if you would like your organisation to join us or if you have any ideas regarding brief presentations from the front of the hall. 

Nigel Drury, Community Connector, Spelthorne Borough Council Council Offices, Knowle Green, Staines-upon-Thames, TW18 1XB. Email n.drury@spelthorne.gov.uk Office Telephone: 01784 448587, Mobile: 07939 256074.

“YOU DON’T LOOK SICK” – COPING WITH AN ‘INVISIBLE’ CONDITION – Edited from metro.co.uk Feb 2019
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.

You Don’t Look Sick is a series (online at metro.co.uk) that 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.

Amelia, 24, from Plymouth, has Relapsing, Remitting, Multiple Sclerosis (MS), 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.

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’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 (aged 19), after almost a year of experiencing symptoms and she developed Trigeminal Neuralgia (facial nerve pain) and Graves’ Disease (a thyroid disorder) as a result of treatment.

‘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.

Amelia adds that one of the biggest challenges is the perceptions people have of her as she looks young and healthy. ‘I’m not one to start an argument, but if someone questions me, I’m happy to tell them I’ve got MS. Just because many symptoms are invisible, it doesn’t mean someone isn’t struggling. 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.’ Read more: 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/

PLEASE OFFER ME A SEAT - BADGE AND CARD APPLICATION – Transport for London (TfL)
If you struggle to stand while using public transport, there is a free badge and card available to help you alert fellow customers that you need a seat.

The badge and card can be used on all our services: London Underground, London Overground, TfL Rail, Buses, DLR, Trams and River Services. You don't need to explain your reasons for the badge and card with either our staff or fellow customers. Please remember the badge and card doesn't guarantee you a seat.

'Please offer me a seat' packs can be sent to any address in the Greater London area, and to South East England. You can order one by filling out the ‘online form at https://tfl.gov.uk/transport-accessibility/please-offer-me-a-seat or by calling TfL Customer Services on 0343 222 1234.

If you are a charity or organisation and would like to make a bulk order, contact TfLAccessibility@tfl.gov.uk.

SENSORY EVENT INVITATION
For people who are Blind, Partially Sighted, Deaf, DeafBlind or Hard of Hearing

Are you a Surrey resident? This event is an opportunity to come and find out about information, advice and support. There will be equipment to view and test on the day. BSL interpreters are available. This is ‘Drop-In’ event so no need to RSVP.

Tuesday 7th May 2019 10.30am - 2pm at The Hythe Centre, Thorpe Road, Staines, TW18 3HD. Telephone: 01372 377701

SMS: 07860 026269 or Email: info@sightforsurrey.org.uk www.sightforsurrey.org.uk