Epilepsy Futures a chance to see life differently

Transcription

1 Newsletter of Epilepsy Connections Connections Issue 60, December 2017 Epilepsy Futures a chance to see life differently Earlier this year we announced that the Big Lottery Fund had awarded us 3 year funding to support our exciting new project, Epilepsy Futures, which is open to adults aged 18 or over: with a diagnosis of epilepsy who can travel to central Glasgow to take part who are ready to engage in a 6 month supported programme of positive action. We have created this service because we recognise the impact a diagnosis of epilepsy can have on an individual affecting their confidence, their community connections and their sense of themselves. Each 6 month group will run 3 days per week (Tuesday to Thursday) and will consist of a programme of activities delivered by Epilepsy Connections staff, volunteers and partner agencies. Workshops will include topics on epilepsy self-management, confidence building, healthy lifestyle managing mental health and planning change and we will offer support to encourage participants to access other local learning and social opportunities, including college courses, going to the gym, walking groups, gardening, healthy eating, volunteering and community activities. A small group of specially recruited peer mentor volunteers will support the participants as they embark on their journeys. These mentors are people who are living with epilepsy, and they will act as motivators and encouraging supports. During each 6 month programme we will then be looking to encourage 4 participants to support the next group, increasing the capacity of our service users to represent the needs of people living with epilepsy and creating a pool of motivated, confident people. Peter Dale has now joined our team as the Epilepsy Futures Project Co-ordinator and our first group has just started, with people coming from Glasgow, Ayrshire and Falkirk and ranging in ages. Are you interested in Epilepsy Futures? If you would like to find out more, please contact Peter Dale for an initial chat by calling , or him at pdale@epilepsyconnections.org.uk Our first group to attend Epilepsy Futures Supporting people with epilepsy

2 PAGE 2 CONNECTIONS Epilepsy Fieldwork Services: help with disability benefits Our Epilepsy Fieldwork teams in Greater Glasgow & Clyde, Forth Valley and Ayrshire & Arran are busier than ever making sure you have the information and support you need to live as well as possible with epilepsy. We re getting more and more requests for help with PIP and ESA, and we are doing what we can to help although we are unable to represent claimants at Appeals. If you need help to apply for disability benefits, or if your application has been turned down, please get in touch with us as soon as possible. Timescales for making claims and challenging decisions are short, and we need as much notice as possible to be able to give you an appointment. If you live in the Greater Glasgow & Clyde area, please note that appointments for help with completing forms are available on Mondays only. If we re unable to help, we will refer you to other sources of support near you. Please note that our working hours are 9.00am 5.00pm, Monday Friday. If you would like to speak to an Epilepsy Fieldworker about any epilepsy related matter, please try to call before 4.30pm to give us time to handle your enquiry. Welcome to our 3 new members of staff L to R: Frey O Brien, Admin Assistant Peter Dale, Epilepsy Futures Project Co-ordinator Colleen Wilson, Outreach Worker, Schools Project Tell us how we are doing and win a 20 high street shopping voucher Epilepsy Connections exists to support people with epilepsy, their families, friends and carers. It s important for us to know that we re providing the right services, and that we are giving you the help you need. Your feedback is vital and we d be grateful if you could take a few minutes to complete and return the enclosed survey. If you d like to enter our prize draw to win a 20 high street shopping voucher, please make sure you add your name and address and return your survey to Epilepsy Connections, 100 Wellington Street, Glasgow G2 6DH by Friday 5th January 2018 If you prefer, you can complete the survey online and enter the prize draw at Children s Events We are planning next year s programme of fun activities for families affected by childhood epilepsy. The programme will include old favourites like indoor climbing, bowling and the panto and we re looking for a couple of new challenges to throw in! Activities take place on Sunday mornings in Glasgow, and are open to any family affected by childhood epilepsy who wants to join in. We have a great time, with lots of laughs, and a chance to make new friends. We are grateful to everyone who raises funds for these activities, which allows us to provide them free of charge. If you are interested in being added to the mailing list to receive information about future children s activities, contact the office on

3 ISSUE 60, DECEMBER 2017 PAGE 3 People s Forum During the summer, members of the People s Forum approached their MPs, MSPs and Local Councillors using our leaflet Our Message to Elected Members. We have been delighted at the response to the leaflet which included a question about PIP being raised in the House of Commons. The leaflet has now been printed and we are discussing ways to promote it, not just to elected members but to people with epilepsy who might wish to use it as a lobbying tool. A copy is enclosed with this Newsletter. Forum members continue to take up opportunities to become involved by attending the Cross-Party Group, taking part in the pilot of a Resilience Workshop and meeting MPs and MSPs with Shirley Maxwell, Executive Director. There promises to be many more opportunities for involvement in the coming year. We welcomed a new member, Raymond Hussain, at the last meeting but at the same time said goodbye to a long-serving member, John Bruce, who has now joined Epilepsy Connections Board as a Director. Befriending News Volunteer Co-ordinator Scott Coyne and 4 of our Volunteer Befrienders attended the Befriending Networks Annual Conference in Edinburgh to receive our Quality in Befriending Award (QiB). This award is testament to the special commitment made by our Befrienders and recognises Epilepsy Connections commitment to ensuring that the Befriending Service, including the training and support of volunteers, is delivered to the highest of standards. It was a great day, particularly for our Befrienders who were given a rousing ovation on presentation of the award! They also greatly enjoyed the opportunity to share practice and debate with other delegates. Group photo L to R: Martin Mowat, Sharon McLean, Scott Coyne, Alex Specking and Brian O Reilly. Out and about Jim Thompson, our Ayrshire & Arran Fieldworker attended an event to find out more about the Bank of Scotland Foundation, an independent charity which receives an annual donation of 2m from Lloyds Banking Group to fund the Foundation's Small, Medium, Large and Matched Giving Programmes which support local, regional and national charities working at the heart of communities across Scotland. Photo L to R: Jillian Baillie, Chief Executive of the Bank of Scotland Foundation and Jim Thompson, Epilepsy Connections Fieldworker in Ayrshire & Arran A young hero Rodger, one of our clients in Forth Valley, had a series of several consecutive seizures in the presence of his 11 year old son, Cian. Cian was very brave in dealing with the incident. He tried calling his mum but couldn't get through. He then managed to put his dad into the recovery position and called an ambulance, staying with his dad to tell the paramedics about his dad's epilepsy and his medication etc. The family approached Epilepsy Connections to obtain some form of recognition for Cian and to congratulate him on being so brave and helping his dad during such a dangerous seizure. We issued a certificate which was then presented to Cian at his end of year school assembly. A very proud father and son If you have a child who has handled such a situation and you would like them to receive some form of recognition, just let us have the details and we will issue them with a certificate.

4 PAGE 4 CONNECTIONS EVENTS RUNNING IN OUR GLASGOW OFFICE 2018 Epilepsy Awareness Session Thursday 18th January, 10.30am 1.30pm This session is open to paying customers at a cost of per person. However, it is free of charge to people with epilepsy, family members and unpaid carers. Heartstart (First Aid) Session Thursday 25th January, 10.30am 1.30pm The skills of emergency life support (ELS) are simple and can save lives. ELS is a set of actions needed to keep someone alive until professional help arrives. Memory Session Tuesday 20th February, 10.30am 1.30pm This session can t cure memory problems, but will help you learn how to make the most of your memory by using practical strategies, techniques and technology. All these courses are free of charge to anyone with epilepsy, their family and unpaid carers. If you would like to attend, phone the office on to reserve a place. Friends Connected (Glasgow) our social group for adults, continues to meet on the first Tuesday of the month either at Central Station or at AMF Bowling, Springfield Quay where there will be a choice of 10 pin bowling/a meal/playing Bingo. People attending are expected to pay their own expenses. We welcome new members who wish to meet other people with epilepsy in a fun, social setting. Call Scott on if you wish to attend or if you need further information. FORTH VALLEY CHRISTMAS LUNCH DATES Falkirk Group Christmas Lunch Thursday 30th November (2017) Clackmannanshire Group Christmas Lunch Wednesday 6th December (2017) For further information or to book a place, contact Gill or Ewan at the office on EVENTS RUNNING IN FORTH VALLEY 2018 Information and Support Groups Room 2, Park Street Community Education Centre, Park Street, FALKIRK, 10.00am noon Wednesday 10th January Wednesday 7th March Information and Support Groups Clackmannanshire Community Healthcare Centre, Hallpark Road, SAUCHIE, 10.00am noon. Wednesday 24th January (Health Room) Wednesday 21st March (Group Room) Friends Connected (Forth Valley) The next Friends Connected, to be held in Falkirk, will be on Wednesday 14th February. The next date for Friends Connected to be held in Alloa, will be Thursday 22nd February. Venues and times still be to be confirmed. For further information about events in Forth Valley, or to book a place, contact Gill or Ewan at the office on

5 ISSUE 60, DECEMBER 2017 PAGE 5 AYRSHIRE & ARRAN FIELDWORK SERVICE Jim Thompson, our Fieldworker in Ayrshire & Arran is based in: Fullarton Connexions Church, Church Street, Irvine KA12 8PE every Thursday from 9.00am 5.00pm and every Friday morning from 9.00am noon. Ayrshire Central Hospital, Irvine every Friday afternoon from 12.45pm 5.00pm in clinic with Gareth Davison, Epilepsy Specialist Nurse. If you would like further information on the services Jim provides, to make an appointment with him, or to reserve a place at any of the sessions listed below (which are free of charge), he can be contacted on or by jthompson@epilepsyconnections.org.uk AYRSHIRE & ARRAN YOUNG PERSON S GROUP Thursday 16th November (2017), pm Venue: North Ayrshire Carers Centre, 174 High Street, Irvine KA12 8AN The group are keen to get some social activities going, so a Christmas lunch may be on the cards! All welcome. EVENTS RUNNING IN AYRSHIRE & ARRAN 2018 Ayrshire Epilepsy Support Group Venue: Fullarton Connexions Church, Irvine Thursdays from 5.00pm 7.00pm: 25th January and 1st March All welcome. with Gareth Davison, Epilepsy Specialist Nurse and Jim Thompson. The group discussed topics for 2018 and these included: Hearing about the benefits system and the impact it has on people affected by epilepsy. Raising awareness about epilepsy with employers and the wider public. Looking at how to connect with people who are hard to reach due to their location, lack of transport and sometimes lack of information. Information on telecare/telehealth aids and equipment. Occupational Health and how it benefits people affected by epilepsy. First Aid. Young Person s Group Venue: Fullarton Connexions Church, Irvine (Note the change of venue as the Carers Centre is not available) Thursdays from pm: 15th February and 19th April with Gareth Davison, Epilepsy Specialist Nurse and Jim Thompson. Memory sessions and Epilepsy Awareness sessions will be scheduled for the forthcoming months and Jim Thompson will communicate details once dates and venues have been agreed.

6 CONNECTIONS Epilepsy Connections Head Office 100 Wellington Street Glasgow G2 6DH t: f: Forth Valley Fieldwork Service Administration Offices Falkirk Community Hospital Westburn Avenue Falkirk FK1 5SU t: Website: 12th February 2018 Life is Beautiful Photo Competition For International Epilepsy Day 2018, the International Bureau for Epilepsy are launching a photo competition with two categories (for those under 12 years and those over 12 years) and with a prize fund of US$2,000. For full details plus the rules of the competition please visit: Profile of Andrew Lindsay, Director of Epilepsy Connections I am half French and half Scottish, born in Rome, Italy and lived in 8 countries, including USA, which is where I got my American twang This is how I try and explain my accent to anyone who asks. I am what is kindly referred to as a political and policy geek. A graduate of University of Glasgow (in politics). I worked in the Scottish Parliament for an MSP for over a year. Following this I earned a temporary 4 month placement through the Talent Scotland Graduate Placement Programme where I worked for a small manufacturing firm to determine the feasibility of them expanding internationally. Following my global sales career of 4 months I moved to a field which was of more comfort to me policy and campaigning. I spent the next stage of career at the incredible charity fighting against fuel poverty, Energy Action Scotland, where I helped with their external engagement, research and social media. Here I gained a passion to volunteer and I started to explore the possibility of becoming a Trustee for a charity. In 2013 I joined my current employers, Big Lottery Fund Scotland, as a Policy and Public Affairs Adviser. That means I am charged with talking to and managing the relationship of all the politicians who are interested in the work we do, which unsurprisingly, is quite a lot of them! I also train and support small third sector organisations in setting up and delivering their own public affairs work. Between 2014 and 2016 I was a Trustee for a small charity in Stirling, Town Break Stirling, which does amazing work to help support people through early stage dementia. In 2016 I was made a Director of Epilepsy Connections. My passion comes from giving something back to the third sector and volunteering as a Trustee allows me to share my experience and skill and make me feel like I am contributing to a particularly good cause. Along with the usual duties of a board member I give specific advice to the management team on social media, communications, marketing, external engagement, and third sector. Epilepsy Connections is a company limited by Guarantee and Registered in Scotland No Registered Office: 109 Douglas Street, Glasgow G2 4HB. Recognised as a Scottish Charity No. SC030677