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Aware

Newsletter of East Sussex Disability Association Issue 39 - Aug 2010

ESDA helps with UN Report

There are exciting times ahead for ESDA We have been asked by the UKDPC (United Kingdom Disabled Persons Council) and DisLib (Disability Lib) to help them with their monitoring of the newly ratified United Nations CONVENTION on the RIGHTS of PERSONS with DISABILITIES The UK ratified the convention on 8 June 2009 and its optional protocol on 7 August 2010, which basically means that once a country ratifies a convention, it formally agrees to do what the convention requires. This Convention includes for disabled people, amongst other things the right to: • have the same chances and rights at work as other people, • have the best possible health, • live in the community, • go to school or university, • to be treated equally and participate fully in all aspects of life. Countries that ratify the convention will also have to report regularly to the UN about the steps they are taking to protect and promote disabled people's rights. Which is where ESDA comes in There are nine regions across the UK that will be monitoring and collecting data. Over a period of four months ESDA will be monitoring and recording data from across the South East Of England, to see how many times the Convention has been breached. We will be asking our colleagues at other Disabled Persons Organisations (DPO) across the South East to provide us with evidence of breaches in the Convention. This evidence will then be added to a specifically designed database and reports generated, the evidence will all remain anonymous, although an audit trail will be evident should anyone ask. The Convention is an International agreement between States, once ratified it becomes binding. It does not automatically become law, but can be used as leverage in conjunction with the Human Rights Act.

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Contents ESDA helps with UN Report ..cover Editorial .........................................2 View from the Chair.......................3 News .............................................4 ESDA services Fundraising .......5/6 Coach Service Ltd .........................7 Information Service, Volunteer Coordinator/DLC ...........................8 News from Local Groups ....9/10/11 LINk.............................................12 Volunteering at ESDA .................13 Wheelchair Service Review ........14 Letters .........................................15 Events and contacts ................back

Editorial Nick Tapp CEO

Putting People First – what does it mean for disabled people? It seems like only moments ago that I wrote my first article as CEO and now I’m being reminded that it’s time for the next issue! So what to write about? The new Coalition Government? Cuts? England’s poor performance at the World Cup? Or how about ‘personalisation’ and ‘Putting People First’? What do they mean for disabled people?

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Personalisation means thinking about social care services and support in a completely new way. It is about starting with the person rather than the service. This means thinking about the person as an individual with his or her own strengths, likes and dislikes, hopes and aspirations and then enabling them to identify their needs, make choices about how those needs are met in order that they have control over how and when they are supported to live their lives. Traditionally people have often not been able to decide on what sort of support they receive or when they receive it. They’ve had to fit their lives around what was on offer. Personalisation will give people much more choice and control over their lives. This new way of providing support to ensure personalisation is called ‘Self-Directed Support’. Personalisation comes with a whole raft of new terminology associated with it. This in itself can be confusing. East Sussex County Council have a very useful jargon buster on their website – if you can’t access that and would like a copy please call Julia at the Information Service and she will send one to you. ESDA sent three disabled people on ESCC training to enable them to provide assistance to disabled people who are choosing this new way of receiving their services. They will work with individuals to devise their Support Plan and consider how they might use their Personal Budget to meet their identified outcomes. These three people are part of a much wider network of representatives from organisations and individuals who will be able to help people going down this route. There’s not enough space here to go into much detail but if you want to know more get in touch with us. We have lots of useful information we can send you. n

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View from the Chair Tony Powell

WILL YOU HELP TO SAFEGUARD YOUR USE OF THE COACH OUTINGS? Now the warmer weather is with us, even more people enjoy the experience of going out to visit places of interest and leisure. Yet, what may be a simple activity for the majority, frequently turns out to be a major planning exercise for many disabled people and their families. And in saying this, I pay tribute to all those people in ESDA’s local groups who spend so much of their time organising the arrangements for such outings. It is vitally important we continue to organise these outings because a large number of local ESDA members live on their own with very little opportunity to meet people and socialise outside of these regular gatherings and outings. And the informal advice and support given by disabled people to other disabled people at these social activities is absolutely invaluable in enabling disabled people to have choice and control of their lives and be included as equal members of society. To do so the volunteers with the ESDA local groups who organise transport and outings, act as escorts on outings and arrange care for disabled people. They rely heavily on having use of the ESDA

Coaches “door to door” transport service. A vital service that ESDA is only able to provide for the local groups and other umbrella organisations through the annual contribution to the coach service by East Sussex County Council. That is why, in this time of national and local government cuts in costs, we must do everything possible to safeguard this annual contribution as far as we are able by proving the worth of a ESDA coach service which effectively reduces the “Day Care” cost to the county by pro-actively marketing the service within ESDA and those “umbrella organisations”. And, yes, you can really help to safeguard the use of your coach outings by telling everyone – your county councillor and your member of parliament – by letter, email or phone how your use of ESDA coaches has, as a disabled person, improved your quality of life.

Today is the time to do it; tomorrow may just be too late Tony Powell Chairman of the ESDA Board of Directors n

One of our coaches on a trip out with some of the disabled people who participate in regular gatherings and outings.

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News way that people will only be considered as possible donors if they happen to die in hospital.

Of the 25,000 kidneys patients on Dialysis in the U.K., 3000 die every year, 400 of whom die while waiting on the kidney transplant waiting list. The kidney transplant list is currently 7,000 strong and yet only seven transplant operations are carried out each day. Every day in the U.K. it is normal for 1,500 people die, 400 of those are known to have signed the Organ Donor Register. Because each person has two kidneys that is potential life saving kidneys available every day; and yet only 7 operations are carried out each day. If the NHS could manage 7 more operations a day the waiting list could be eliminated within three years, but for some reason this doesn’t happen and people continue to languish on Dialysis, or die. It is true not everyone makes a suitable donor, and not everyone dies in circumstances where organ donation is possible, but kidney patients only need 7 more operations each day out of a possible 800 a day that become available. Despite the report published by the Organ Donation Taskforce, and the many improvements to the existing system they propose, the NHS is organised in such a

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There is a need for a complete Government and NHS rethink and then re-organisation of parts of the NHS transplantation services are urgently required. The new service must recognise that donors die outside the hospital environment, and then build in the capability to ensure a proactive and fast service that can efficiently bring to the hospital the donor, or the protected organs in sufficient numbers to put an end to the appalling waste of human life, and the utter disregard of potential donor’s wishes. After all, someone who has taken the trouble to sign up to the Organ Donation Register, should not expect to have die in the arms of a transplant surgeon with a donor card clutched in their teeth. Part of a speech given during a debate “Organ Donation: at what cost?” organised by the Human Tissue Authority at the Law Society Chancery Lane London WC2A1PL on the 15th June 2010. Reported by Dave Rogers Vice-Chair of the Hastings & Rother Disability Forum n

ESDA - actively empowering and supporting disabled people - www.esda.org.uk

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The Chief Executive of the National Kidney Federation Tim Statham said ‘800 kidney organs were being wasted every day, when they could have saved lives if they had been used for transplants.’

Despite their declared wishes during life to be an organ donor after death, the majority of deaths do not occur in hospital and that is why there is such an appalling wastage of organs. The denial of people’s wishes before their deaths to be ignored; and the continued deaths of people waiting for transplants are ignored too is almost criminal.


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ESDA Services Great South Run Regular readers will know that I am in training for the Great South Run that is due to take place in Portsmouth on 24th October. Myself and a team of runners will be taking on the 10 mile run to raise funds for us.I know that the economic climate is difficult now but if you can, please support us by either making a donation to us at www.justgiving.com/teamesda2010 or by sending a cheque to us with Great South Run written on the back of it. Please also check the ESDA website for progress on my training and I will give a full report of the run in the next edition of Aware. This year any donations made will go even further, as all donations made in support of

the Great South Run will contribute towards our DEBS appeal (Disability Element Benefits Service) meaning that every £1 donated to ESDA ,enables us to improve the life of a disabled person by £445. This means by donating just £10 you will make a difference of £4450 to disabled people in East Sussex. Based upon previous claims submitted, we anticipate that the service will generate £18 million for disabled people in East Sussex that they would otherwise be unable to receive over the next three years. Thank you again for your continuous support. Mark Bond Fundraiser n

------------------------------------------------------------------------------------------------------------------------------------Help ESDA raise money - Individual giving helps small charities budget and plan for the future. Even £5 a month will help us.

My Details Title_____ Full Name______________________________________________________ Address_________________________________________________________________ _____________________________________________Postcode___________________ Phone______________________Email________________________________________ I would like to give a single donation of: £10 o £20o £50 o

£100 o Other o

I enclose a cheque/postal order made payable to East Sussex Disability Association.

Gift Aid it! You can help us - just by ticking a box! If you are a UK taxpayer, please tick the box we can receive an extra 28p from every £1 you give at no extra cost to you.

o I am a UK taxpayer and would like all donations I have made to East Sussex Disability Association for the four years prior to this year and all donations I make in the future to be treated as Gift Aid donations. Name of Taxpayer__________________________________Today’s date

oooooooo

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ESDA Services Fundraising Those of you that have visited the ESDA offices may have noticed the dramatic changes to the former LINk Offices. Due to a generous donation from the Ian Karten Charitable Trust we have been able to install a new fully accessible computer suite. The room comprises of 11 I-Desk Computers, an interactive whiteboard, Widescreen TV and a braille printer. It also features big key keyboards and trackball mice.

‘The Karten Trust is very happy to welcome ESDA to the Karten Network, an association of 88 centres in the UK and 10 in Israel. All the centres work with disabled people to enable disabled people to increase their IT skills and increase their independence, whether that is through employment or being more active citizens. We are really looking forward to seeing how the centre at ESDA develops, and wish everyone there every success’ Ceri Hibert - The Karten Trust

We are planning to offer a range of courses in the coming months including European Computer Driving Licence courses and employment training courses. We will also be offering the room out on selected dates to for members to access the internet at their leisure.

‘At ESDA we are very excited about our new IT Training Suite. This has been made possible by the generous funding from the Ian Karten Charitable Trust. As the installation is finalised we are getting together a programme of training opportunities and IT taster sessions for disabled people in East Sussex and hope that many of you will take advantage of them’.

Mark Bond Fundraiser

Nick Tapp CEO n

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In database_______________________

Ref Number_______________Date Received______________

S/O Sent to bank___________________

Notes______________________________________________ G/A updated______________________ ___________________________________________________ First Payment Received_____________

I WOULD LIKE TO GIVE A REGULAR DONATION TO: EAST SUSSEX DISABILITY ASSOCIATION INSTRUCTION TO YOUR BANK OR BUILDING SOCIETY TO PAY BY STANDING ORDER Name and full postal address of your Bank or Building Society

____________________________________ ____________________________________ ____________________________________ ____________________________________

I would like to support East Sussex Disability Association with a regular gift of:

Name(s) of Account holder(s)

Month o Quarter o

___________________________________ ___________________________________ Branch Sort Code

Bank/Building Society Account Number

oooooo

oooooooo

£2o

£5o

£10o

£20o

£60o

£100o

other o

Please pay this amount on________________and then every: Year o

until further notice

Signature(s) __________________________________________________ __________________________________________________ Date______________________________________________

Please pay to Lloyds Bank, Lewes branch. 82 High street, Lewes, E.Sussex, BN7 1XW to the credit of ESDA sort code 30-95-01 Account Number 00044635

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ESDA Coaches Services HELP KEEP ESDA’s ACCESSIBLE COACH SERVICE ON THE ROAD Did you see the breakfast news on BBC1 on Saturday July 17th, when Karl Wilding NCVO (National Council for Voluntary Organisations) was interviewed? He was very concerned for organisations such as ESDA, saying that Government bodies are arbitrarily cutting funding to Voluntary Organisations. We at ESDA have always proved the need for groups such as ours, as we fill the large gaps left by local councils. We now have to do this more than ever, with drastic cuts in transport funding being considered by local councils. Croydon council residents have already been told they are losing their accessible transport. --

WE DON’T WANT THIS TO HAPPEN TO OUR TRANSPORT! In 2005, when the service was last under threat, we successfully won continued funding by the County Council aided by a huge show of support from ESDA members. We need once again to amass a large dossier of testimonials and letters of support from our members and other community groups who regularly use our service. Please help by dropping us a few lines to the address at the foot of this article, explaining what our service means to you. Many thanks in advance for your help! STALWART DRIVER RETIRES Since the last edition of Aware Magazine one of our long standing ESDA drivers, David Taylor, retired at the end of May after 12 years service. The ESDA Board extended to David their sincere thanks for his expertise in carrying out his duties as a

driver, and for the help and support he has shown to all our ESDA member groups and outside groups that have used our service over the years. Many ESDA groups marked their own send off occasion with David during the month of May, when we also held a farewell lunch at ESDA Headquarters for David and Pauline to show our appreciation for all his hard work.

David said ‘I would like to thank everyone for the messages, cards and gifts you have given me on my retirement. I will miss seeing you all and hope you continue to enjoy the trips, lunches and afternoon teas. Though it won’t do me (or my waistline) any harm not to be enjoying them with you! A special thanks to Philip Ayres for arranging supper with the ESDACS Board, a most enjoyable evening’. To find out how ESDA Coach Services can help with accessible travel arrangements call Wendy on 01323 514512, or visit our new website www.esdacoaches.com Wherever your group would like to visit, we can take you Door to Door! ESDA Coach Services Ltd, 1 Faraday Close, Eastbourne BN22 9BH * To qualify you must be a non-profit making community/voluntary group, with one or more member(s) who have difficulty travelling on conventional transport

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ESDA Services Information Service

ESDA Volunteer Service Marianne Colliard Volunteer Coordinator

• Do you need help with small jobs around your home? • Do you find it difficult to pay for this? • Are you aged over 65 or over? If you answered yes to all three questions and you are an East Sussex resident you maybe able to apply for the ‘handypersons grant’ available from East Sussex County Council. The grant is available to you if you meet the above three criteria and have under £23,000 in savings as an individual, (£46,000 for a couple). You can apply for up to £200 in a two year period, funds should be available until March 2011. We have some application forms available here at ESDA, or alternatively contact the Supporting People Team, ESCC, Sackville House, Brooks Close, Lewes, BN7 2FZ Tel:01273 482805 Grants for younger people maybe available from other sources. n I’d like to thank all those staff and Volunteers who attended the BBQ on 23rd July, it was a shame about the weather, but we still managed to have BBQ’d food thanks to our

umbrella touting staff!! n

Greetings  My name is Marianne Colliard and I am writing to introduce myself as the new Volunteer Services Coordinator. I am here to recruit, train and support all volunteers who work with ESDA’s central services and all of our local groups and District Committees. Some of you may remember me from my time at ESDA previously working on several different projects from 2002 and later as Mark Bond’s predecessor on Fundraising. It’s good to be back at the Association and I am looking forward to working with you  In the meantime should you wish to get in touch I would be delighted to hear from you  My phone number is 01323 514531 at ESDA My mobile phone number is 078 33 096 625 My email address is: marianne.colliard@esda.org.uk

DLC Do you have difficulty getting in and out of the bath? If so, ESDA in association with AGE CONCERN, warmly invite you to join us at Azur – Marina Pavilion, St Leonards on Sea, TN38 0BU. Wednesday 22 September 2010 - 10am to 1pm

You can view a selection of bath lifts and other bathing aids; get information on benefits & falls prevention; talk to Trading Standards as well as get tips on staying healthy and active. FREE ENTRANCE FREE REFRESHMENTS For more information call 01424 426162 n

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News from local groups Hailsham In April our group were invited to South Malling Primary School in Lewes for the afternoon - one of our members has a relation who teaches there. The pupils of the music class entertained us with a programme of songs that depicted a day in the school life at South Malling School and they finished with the songs from Oklahoma and Vera Lynn. Our members all joined in with the singing. We were then given a lovely tea prepared and served by the parents of the pupils. Our thanks go to the staff of the school and especially to Mrs Daphne Starnes the music teacher and Mrs Donaghue the Headteacher. Our members thoroughly enjoyed themselves, one lady said she had such a lovely time she cried nearly all the way home!!! Vin Tapp Hailsham District Committee Group n

Hailsham Out & About In June we visited the Gunwarf Quays & Spinnaker Tower at Portsmouth. The Gunwarf Quays is home to over 90 discount designer retail outlets, also many restaurants and bars, a cinema, a bowling alley and much much more. It is a pleasant wheelchair friendly area. If you find any steps you will also find a slope nearby. When you have finished shopping there are many seats available on the quayside where you can relax and watch the boats on the river. For most of us though, the first attraction was the Spinnaker Tower and we were not disappointed. It is a magnificent structure and

certainly has the ‘wow’ factor. Our group was booked to go up the Tower at 1pm but they very kindly said that if we arrrived at the Quays earlier we should go along to the booking office and we would be allowed up the Tower then. After we had paid our dues we were escorted to the lift, here I must report that, because of ‘Health and Safety’ rules only two wheelchair users are allowed to be up in the Tower at any one time.They can stay there for around 30 minutes, but until they come back down no other wheelchair users can go up. We only had four so it didn’t pose a problem. There did not appear to be any restriction on those who used 4 wheeled walking aids. There are two viewing decks which are accessed by a high speed lift.There is one other deck above those called the ’Crows Nest’, this is open to the elements and can only be reached by climbing 30 steps. Most of us stayed on decks 1 or 2, thoroughly enjoying the spectacular panoramic views reaching as far as the Isle of Wight. There were Tower guides wandering around the decks who were only too pleased to answer questions. We were told they also have talking telescopes, although nobody saw them or looked for them. The ground floor has a very good restaurant with a waterside veranda. Some of us managed to find seats and tables out there, where we had our lunch. It was a bit breezy but we enjoyed it. Many thanks to our drivers Bill and Richard for a lovely day out. There is no charge for the Gunwarf Quays. Entrance to the Tower is £5.40pp which is a discounted price for groups of 15+. Drivers and Organisers/Leader go free. Phone number for Tower bookings is: 023 9285 7320 Mildred Kay, Hailsham Out & About n

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News from local groups Seaford Kurlers away win

Scooter Power for Seaford

The ESDA coach collected us all from the Wave Leisure Centre Seaford and off we went. Our first stop was the Windmill pub where we had lunch. On then to the Dome Sports and Leisure Centre in Littlehampton where we were warmly greeted by Pat and John Horne and the teams of the 'Dreams of Social Happiness' club known as DOSH. The DOSH challenge cup is a handsome trophy and this was the first time it was played for on 27th May.

SussexRoamAbility is a new group recently opened up for all those that love to ramble in the countryside. All that is needed is a motor scooter and the joy of being out and about with friends. May 31st was the first of our rambles and our destination was Newhaven Fort.

At half time there was a break for drinks and biscuits and the score was level. Everyone enjoyed the play and the friendly rivalry and result was that Seaford won - but only just. We are all looking forward to the return match on 22nd June when Littlehampton intend to take the cup back - Seaford have other ideas. For further information ring: Sheila Matthews 01323 892647 n

Congratulations Lynn!

We met at the Martello Tower in Seaford, had coffee at the kiosk there and started off along the seafront. At Tidemills we went through the conservation area. A variety of birds and scampering rabbits were about, then on to Newhaven and the Fort. We enjoyed lunch together at the cafe in the Fort then had enough time to look around at our leisure. The views from the ramparts were spectacular on this clear and sunny day, all the scooters were able to get up there with no problem. There will be many more ‘Rambles’ arranged in the near future,for all across Sussex and the South Downs and as you can see from our photograph family and friends are always welcome on our rambles.

Lynn Wardle, Chair of Sedlescombe and Westfield District Committee, has been awarded a certificate of thanks in Westfield's Celebrating Volunteering event for her work

If you would like to know more please contact us, we would be delighted to hear from you.

with ESDA.n

e-mail: SussexRoamers99@aol.com n

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Hailsham I was lucky enough to be invited along to the Hailsham local groups outing to central London for a flight on the London Eye on 12th May 2010. We started out from Hailsham in our lovely coach with Dave Taylor as our driver; this was to be his final outing with the Hailsham group due to his retirement. On the other coach was Dave Allen, he went off to collect members from Rushlake Green; both coaches met up for the journey to London. Having stopped on the way for a comfort stop at Pease Pottage we arrived at the ‘Eye’ in good time for our 1pm flight, Sharon went off to organise the pre- booked tickets whilst we enjoyed the sunshine and some had ice creams. We were able to board our flight slightly ahead of time, we had about eight people in each pod, the staff were excellent as they stopped the pods and laid down ramps to enable our members who use wheelchairs and walkers to board safely. You could see the new Wembley stadium, and the Houses of Parliament really clearly, the Gherkin (St Mary’s Axe, Sir Norman Foster) could also be seen along with St Paul’s Cathedral. We were really lucky with the clear skies allowing us views into the far distance.

After having the flight we disembarked and re grouped when everyone had successfully landed. Some people went off for coffees and others for walks along the embankment; it had started to get a bit chilly by this time so we went back to the bus for our picnics. After being fed and watered, some of the members fell asleep on the journey home. A great end to a lovely day. I would just like to say a huge thank you to the Hailsham group for allowing me this experience. Julia Plowman ESDA Information Officer n

DELTA 'On arrival at the DELTA outing to Marwell Zoo on Thursday, 20 May, Coralie Clement, DELTA Administrator, presented the driver, David Taylor with a retirement card and a collection from DELTA members and friends in a 'golden piggy'. We all wish him well on his retirement from ESDA and thank him for the many outings he has safely taken us on and the considerate way in which he drove.

The photo shows David receiving his card and gift from Coralie surrounded by DELTA Members and Friends. Edwina Morris n

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LINk LINk’s Annual Review Meeting

3 June 2010 This year we met at Sovereign Harbour Yacht Club, Eastbourne, to adopt and publish our annual report, highlight partnership working and for the first time the meeting could be followed live on Twitter! Our speakers included Jeremy Leggett, Action in Rural Sussex; Marilyn Hansford, Care Quality Commission, Claire Lee, Health Overview and Scrutiny Committee; Janet Colvert, Core Group Chair , Alan Keys, Core Group Vice Chair, Ivy Elsey and Maureen Lawrence, Core Group members and Liz Lash, Authorised Representative. Contact us for a copy of our annual report.

Authorised Representatives from East Sussex LINk, along with Brighton and Hove and West Sussex LINks, have been commissioned to ask patients, carers and relatives about the food and drink available in the hospitals in East Sussex. The visits took place during April with a report being submitted to the Review Board. The picture below is of the meeting held between LINk representatives and the Review Board to discuss the findings. The reports will be published on 8th September and discussed at the full HOSC meeting on 16th September. The meeting can be followed live via the East Sussex County Council website: http://www.eastsussex.ukcouncil.net/site/webcasts

Team News: Debbie Harris takes up her new role as Development Worker for Wealden & Lewes as from July 1st. Welcome to Amy Cornish as Administrator. Amy shares the role with Sara Willis. Get Involved: Follow us on Twitter, post a comment or join a group on FACEBOOK – close on 500 people do!

PLEASE REMEMBER Let the LINk know your experiences of using health and social care services— good or not so good. Health Overview and Scrutiny Committee:

Review into Food, Nutrition and Hydration In East Sussex Hospitals.

Not sure how? Come along to a “workshop” in the new Karten Suite here @ ESDA to find out more - contact Sara 01323 514510 for more details. Elizabeth Mackie LINk Support Teamn

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Volunteering at ESDA Vic Fields Admin Volunteer

The time had finally come for me to make a decision on whether to try to return to work or not. I had been unemployed since leaving my post with Revenue and Customs back in 2006. I was now pain free after 3.5 years of agony with a hip problem. I had a new hip, needed a new start, but what to do? After my experiences working for the civil service, I must admit to being more than a little apprehensive about returning to work for another government department. This would have been my best choice due to disability and length of time I had spent out of work. Someone close to me suggested volunteering and mentioned ESDA. Well, it would be a start and there would be no pressure. An opportunity to see if this old body of mine could cope with the rigours being back in an office environment again. After speaking to Steph, (Finance Manager) explaining my needs and saying I could possibly do a couple of days a week to start with and see how things go. I was shown around and told who everyone was and what they all did. I must admit to being quite impressed at that point (something not easily done by organisations claiming to help others). It was more than I expected. I started work a few days later, just helping generally with what ever was required. I enjoyed what I

did and the staff were all very pleasant and friendly. (I thought it because I was a “newbie” but I was wrong and glad of it). There was none of the usual backbiting and promotion hunting that you can often find in such an environment. I found it a pleasing place to draw myself back into the working life. I have been working as a volunteer since March and have enjoyed it immensely. I even applied for a permanent position and although I was unsuccessful in my attempt, there will be other opportunities I’m sure. ESDA deliver the services they say they offer. I have dealt with many organisations both professionally and privately as a disabled person, and found many of them to be lacking in the services and level of professionalism they claim to have. ESDA staff have an enthusiasm for their particular posts that is still a refreshing thing to be a part of. Things don’t always go to plan but anyone would be hard pressed to find fault with the dedication shown here. I am glad I took the step when I was told about ESDA and am happy to be a part of the team, even as a volunteer. n

Bob Matthews It is with sadness that we report the death of Bob Matthews. Bob had been involved with the Seaford District Committee where he was instrumental in getting the Seaford Kurlers established. He was also an ESDA Board member. Bob’s enthusiasm will be missed by all who knew him and our thoughts are with Sheila and his family.n

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Aware - Aug 2010

Wheelchair Service Review Help us to improve wheelchair services for people in East Sussex For many disabled people, having an appropriate wheelchair can increase independence and promote a better quality of life. It is vital that wheelchair users are supported by a well resourced efficient wheelchair service to ensure that they have the appropriate chair and/or seating solution to meet their needs. The East Sussex LINk has commissioned a review into the Wheelchair Service in East Sussex. This review is in response to a number of concerns raised by both wheelchair users and their carers and enables us to find out about good and less positive experiences of using the Wheelchair Service. The review will concentrate on areas such as: getting a wheelchair, the assessment process, maintenance of wheelchairs, provision of special seating, appointments, general contact with the service, and overall use of the service. The Review Report will be titled "With our wheelchairs we are enabled: without our wheelchairs we are disabled". We are interested in hearing from both wheelchair users and their carers. There are four ways for you to get involved and tell us about your experiences of the Wheelchair Service: • You can complete a paper or online questionnaire • A face-to-face interview can be arranged if you have in-depth issues that you would like to discuss • You can join the email discussion group at the LINk Wheelchair Service Review Group http://uk.groups.yahoo.com/group/LINkWheelchairServiceReviewGroup/

• You can join the LINk Wheelchair Users Forum on Facebook by clicking on the "Groups" link on your home page and searching for the name of the group. If you are from an organisation with wheelchair users among your contacts, please advise wheelchair users and their carers about the review and encourage them to take part. Anyone who would like to take part should contact Theresa Hodge, the researcher as soon as possible. The closing date is Thursday, 30 September 2010. For further information please: telephone 01424 205414; e-mail research@eaconsultancy.co.uk or write to Freepost RRLG-LRXA-XUGE, Equal Access Consultancy, LINk Wheelchair Services Review, Creative Media Centre, 17 & 45 Robertson Street, Hastings, TN34 1HL.

Heritage Open Days: 9-12th September 2010 - Hastings and St Leonards Sally Booth and Lynn Weddle are two disabled artists taking up residence in Hastings and St Leonards from August to September 2010 as part of the Creative Landscapes project. They will both be based at the Hastings Museum and Art Gallery and The Stade during this time. Sally Booth, a visually impaired fine artist, will run free creative family workshops at Hastings Museum, and Lynn Weddle, a photographer with dyslexia, will run a series of creative workshops for Deaf and disabled participants. For more info please contact Nicola Benge, Creative Landscapes Development Worker on 07825832443 or email: creativelandscapes.hastings@yahoo.co.uk or visit www.heritageopendays.org.uk n

14 ESDA - actively empowering and supporting disabled people - www.esda.org.uk


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Aware - Aug 2010

Letters Dear ESDA, A very big thank you to all of you for such a great day on Friday. It seemed to be an outstanding success and it was good to meet up with volunteers from other districts. Special thanks to the ‘Chefs’, food was great. Vin Tapp, Hailsham n Dear ESDA, I wanted to say a big thank you for all your help with our focus groups last week. ESDA proved to be the perfect venue for us, and of course tailor made for the participants. I do hope everything was left where you could find it – we put most of it back in the kitchen. We have 2-3 people to catch up with who weren’t able to make the groups last week (it’s very rare to get 100% attendance in my experience) – but apart from that I think our data collection is more or less complete. Thanks again Steph. You made my job so much easier. Best wishes to you, Helen n

Dear ESDA, Thank you for all your support you gave us when we were trying to find out about equipment for Mother, your knowledge about certain disability aids was excellent. Thank you again. A happy visitor to ESDA n Thank you for your kind words, we try our best here to provide an unbiased service and only advise you on the equipment that you really need. The DLC is the place to go, it is an appointment only service, call Sharon on 01323 514515 to book an appointment to see our exceptionally well qualified Occupational Therapy Staff. Ed

Dear ESDA

I would like to thank everyone for the messages, cards and gifts you have given me on my retirement. I will miss seeing you all and hope you continue to enjoy the trips, lunches and afternoon teas. Though it won’t do me (or my waistline) any harm not to be enjoying them with you! A special thanks to Philip Ayres for arranging supper with the ESDACS Board, a most enjoyable evening. David Taylor n

Dear ESDA, I have been reading your interesting newsletter and understand about the good work of the East Sussex Disability Association. I wondered if ESDA know of any local groups for disabled people in East Sussex? If so, how do I go about contacting someone to join? Regards Jan n Jan if you contact Marianne Colliard our new Volunteer Coordinator she will put put you in touch with an ESDA Local Group in your town. Marianne’s number is 01323 514531. Ed

ESDA - actively empowering and supporting disabled people - www.esda.org.uk

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Events and contacts Information Service has a new mobile telephone number - this is for text enquiries only and will be switched on Tuesdays and Thursdays when the Information Service is open. The number is: 07564 932445

Do you have difficulty getting in and out of the bath? Wednesday 22 September 2010 - 10am to 1pm ESDA in association with AGE CONCERN, warmly invite you to join us at: Azur – Marina Pavilion, St Leonards on Sea, TN38 0BU. You can view a selection of bath lifts and other bathing aids; get information on benefits & falls prevention; talk to Trading Standards as well as get tips on staying healthy and active. FREE ENTRANCE FREE REFRESHMENTS For more information call 01424 426162

Great South Run 24th October 2010 contact Mark Bond 01323 514528 or mark.bond@esda.org.uk Portsmouth Please sponsor Mark to dress up and run!!

ESDA Skydive October 2010 Jump for ESDA from 10,000ft - £70 Deposit required and a £325 minimum sponsorship. Contact Mark Bond our fundraiser for further details: 01323 514528 or email mark.bond@esda.org.uk

ESDA AGM - Advance notice Friday 22 October 2010 morning,

East Sussex Disability Association

1 Faraday Close, Eastbourne BN22 9BH Tel: 01323 514500 Fax: 01323 514501 Text: 07564 932445 Email: info@esda.org.uk Website: www.esda.org.uk

Form Filling Service

info@esda.org.uk - 01323 514500

Disabled Living Centre

dlc@esda.org.uk - 01323 514515

Information Service

info@esda.org.uk - 01323 514521

Meeting Room Hire

info@esda.org.uk - 01323 514500

Local Services

localservices@esda.org.uk - 01323 514500

Registered charity no. 1042071. Registered in England & Wales as a company limited by guarantee no. 2979027.

Please note that the views or articles in the Aware newsletter are not necessarily the views of ESDA.

Aware Aug 2010  

Aware Aug 2010

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