Newsletters

Newsletter –  November 2012 to May 2013

Evening meetings

• March 2013 - Talk on housing
• June 2013 - Benefits update
• September 2013 - Safety
• October/November 2013 - AGM

Details of these meetings and the venues will be publicised early 2013.

Brighton coffee mornings

These are to be held at the Red Roaster, 1a St James Street, Brighton BN2 1RE (just off Old Steine).  There is full disabled access.  The coffee is excellent and all are welcome.

• Tuesday 27 November 2012          10.30-12.00
• Tuesday 29 January 2013          10.30-12.00
• Tuesday 26 February 2013          10.30-12.00
• Tuesday 26 March 2013          10.30-12.00
• Tuesday 30 April 2013          10.30-12.00
• Tuesday 28 May 2013           10.30-12.00

Please note that there will be no meeting on the last Tuesday in December

Hove pre-Christmas coffee and cake morning

• To be held in the tearoom at Hove Museum.                                                           
• Friday 21 December 2013, 10.30-12.00

Christmas cards

You can now buy Christmas cards from Epilepsy Action.   Most of the cards can also be bough locally, through Cards for Good Causes.   They have a shop in Hove Library, and hope to have one somewhere in Brighton soon.

Campaign for paediatric epilepsy specialist nurse

The campaign has reached an interesting point.   The authorities now say that they want to have such a nurse.   However, they insist that there are not quite enough children with epilepsy in Brighton and Hove to justify employing a nurse, and are suggesting there should be a nurse service combined with other authorities in East and West Sussex.   We could then have more than one nurse, so that there would be cover for holidays and other absences.   Money is of course a huge issue at the moment, but at least they are now talking about a specialist children’s nurse service.

forum4e

Do you know about forum4e?   It is a free online community for people with epilepsy and carers.   You just have to be over 16 years of age, and have access to a computer.   The site is run by Epilepsy Action.   It is a great way to talk to other people who may be going through the same things as you.

Go to www.forum4e.com to join.  

Membership of Brighton and Hove Branch

Some of you have not been in touch with the branch for some time.   We do not want to trouble you if you are no longer interested, and we are mindful of the terms of the Data Protection Act.   If you receive this letter by post, you will find enclosed a form asking whether you wish to remain a member of our branch.   Please fill it in and send it to us at the address given, OR telephone 07565 955990 OR e-mail epaction4btn@yahoo.co.uk

If you do not get in touch we will remove your details from our contact list.

Please note – if you are in regular contact with the branch, or if you receive the newsletter in an official capacity, we have not sent you a form.   And if you receive the newsletter by email you will already have been asked whether you wish to remain a member of our branch. 

Benefits

Sue Dumps from the Brighton Disability Advice Centre came to a branch meeting on 5 September to talk about benefits.

Sue began by explaining that she was giving members an update on changes to the benefits system.  Incapacity Benefit is now Employment Support Allowance (ESA). Although many claimants’ applications for ESA have been turned down, over forty percent of appeals have been successful.  The Disability Advice Centre will help with the initial forms for an appeal and with getting evidence ready for the appeals tribunal, although they are unable to attend personally with the claimant. 

Disability Living Allowance (DLA) will become Personal Independence Payments (PIP) by 2013.  The Government has stated that their aim is to save money by targeting people who really need this benefit.  There will be two levels of payment which will be either standard or higher rate, doing away with the lowest rate altogether.  PIP will not be means tested and those in receipt of this benefit will be able to work.  From April 2013 onwards, people who are currently receiving DLA will be sent letters about changing to a PIP.  Sue emphasised that it is very important to respond to this letter when you receive it next year, as your DLA will stop if they don’t hear from you.

Finally, the Government is proposing to simplify the whole system by introducing Universal Credits (UC).  UC will replace Income-Related Employment and Support Allowance, Income-Based Job Seekers Allowance, Child Tax Credits, Working Tax Credits and Employment Support Allowance, although PIP, Child Allowance and the State Pension will not be affected.  Households will be assessed as a whole and payments will go to one nominated person in each household, and will be paid monthly into a bank account.  Everything will be administered online, although a small number of people will be assessed in person if they are unable to use a computer.  Universal Credit will be capped, which may mean that people living in high rent areas will have to move.  Universal credit is being trialled in some areas and is expected to start by 2014, although new claimants can apply for UC from October 2013.

Here is a link to the Department of Works and Pensions website where you can see a factsheet about PIP: www.dwp.gov.uk/policy/disability/personal-independence-payment/

We are hoping that Sue will be able to attend an evening meeting in June 2013 to give a further update on benefits, as this is an area of concern for many of our members.  The date for the meeting will be confirmed early in 2013.

AGM and Disability Hate Crime

PC Andrea Leahy visited the Branch AGM in October to talk about disability issues, in particular about disability hate crime.  Andrea is one of the Disability Liaison Officers with Sussex Police.  Hate crime is a crime which is motivated by prejudice against a group of people, for example hate crime could be motivated by prejudice against a person’s race, sexual orientation, religion or disability. If you are ever a victim of a hate crime there are various ways of contacting the police:

• Call the Sussex Police Contact Centre on 101 or visit your local police station.
• In an emergency ring 999.
• People with hearing or speech impairment and those who cannot use a voice phone can use the emergency text service on 65999.  Type in which service you require, the details of the emergency and lastly the exact location of the emergency.
• There is also the Typetalk Emergency Line on 18000 for deaf people and speech impaired people.

Trip to Devil’s Dyke

In July, several Branch members met to travel to Devil’s Dyke on the open-top bus.  Fortunately it was a lovely sunny day and we were able to walk over the Downs for a picnic.  Following coffee at the hotel, we returned to Brighton, arriving rather windswept, as we had travelled on the top deck of the bus! We hope to repeat the trip next summer, weather permitting. 

Branch contact details

Website Address

www.epilepsy.org.uk/branch/brighton-and-hove-branch

Branch Email: epaction4btn@yahoo.co.uk Branch Telephone Number

07565 955990

Head office contact details 

Epilepsy Action, New Anstey House, Gate Way Drive, Yeadon, Leeds, LS19 7XY 
Tel Number:          0113 210 8800
Fax Number:           0113 391 0300
Email: epilepsy@epilepsy.org.uk
Helpline Tel Number:  0808 800 5050
Email: helpline@epilepsy.org.uk
Website: www.epilepsy.org.uk

Every reasonable effort   has been taken to ensure the accuracy of the content of this publication, but no responsibility can be taken for any error or omission. The opinions of the contributors do not necessarily reflect the views of Epilepsy Action nor does the inclusion of an item constitute a recommendation. All material produced in this publication is covered by copyright and cannot be reproduced in any way without permission. Every reasonable effort has been made to insure that copyright permission has been obtained for all images  and copy used from other sources.