Glance. Meet our new Employment Officer... neurosupport. Supporting people with neurological conditions and their families.

Transcription

1 Glance neurosupport Supporting people with neurological conditions and their families April/May 2015 Meet our new Employment Officer... See page 2 Liz celebrates award win Turn to page 4 Calling all Walkers! Join our Snowdon Challenge Saturday, 6th June 2015 Turn to page 5 Glance sponsored by Slater and Gordon Lawyers

2 From front page: Meet our new Employment Officer... I would like to introduce myself, my name is John Perry. I am a blind person with a neurological condition and I have been providing training, counselling and practical support for many years. I am the new Employment Officer for Neurosupport, offering support for individuals with a neurological condition, their families and carers. This can include help with looking for work, retaining your job, self-employment, or finding training and educational opportunities. I will help both individuals and employers to get the right equipment, practical support and, where and when appropriate, will work with others to ensure reasonable adjustments are in place for those who may require them in order to carry out their work. If you or anyone you know would like to contact me, please do so as shown below: Direct Dial: Mobile: john@neurosupport.org.uk The Merseyside branch of the national charity, the Spinal Injuries Association (SIA), has been active for over 15 years. The group was founded to provide help, advice and assistance to patients, relatives, friends and care providers throughout the whole North West region. Membership of the group is free. All you need do is attend one of our regular monthly meetings or social nights armed with nothing more than a smile, although chocolate biscuits do help smooth any introductions! Our group is as much about socialising as self help and, as such, we have a very broad membership from all walks of life. To help reduce the huge knowledge gap in many areas of spinal injury, we are staging a free seminar related to Funding and Managing Care Needs. This will be held at Neurosupport on 6th May and is open to all. A Housing seminar will follow later in the year. SIA Merseyside meets on the first Wednesday of each month at Neurosupport. Meetings start at 2:30pm and finish at 5pm. For more details contact Stephen Cronin (Chair, SIA Merseyside) via Neurosupport on or look for us on Facebook at Spinal Injuries Liverpool 2 Glance sponsored by Slater and Gordon Lawyers

3 Brain Awareness Week By Carol Hopwood March saw the arrival of Spring and with it Brain Awareness Week. For many, Spring is associated with new beginnings and hopefully a lightening of mood, with light mornings and longer days. However, for many the seasons no longer hold any significance, life as they knew it has changed forever and it is difficult to see hope or have optimism for the future. I am speaking of those thousands of people every year who sustain a traumatic brain injury or develop a neurological condition. In my job, I meet many families whose loved one has suffered a serious or catastrophic injury. I meet them in their darkest hours as they pray for their loved ones to survive. Later, they are trying to come to terms with a very different life. One that centres around hospital, rehabilitation, fighting the benefits system, financial hardships, failing relationships and more. I am told that people don t understand, that because it s a brain injury and thus not visible people are less accommodating, less understanding than perhaps they would be if the injury was visible. I recall speaking to a seasoned police officer who confessed that when a rookie officer he mistook someone with a brain injury for a drunk and was not as fast as he would otherwise have been to offer assistance. Brain Awareness Week is a good time for all of us to stop and reflect. What would it be like to live in the shoes of someone with a brain injury or neurological condition. How would we cope with losing our job, our identity, our health, our friends and even family. To be dependent on others to exist, to become 'invisible'. That is why it is so important for all of us to work hard to ensure that people who are living with a brain injury or neurological condition do not feel this way. The staff at Neurosupport do an amazing job to ensure this doesn t happen and to give people hope and normality again. A significant part of my role as a brain injury lawyer is to ensure families have access to the best rehabilitation, case management support and financial security as soon as possible. In all of the cases I deal with as a lawyer, another party has caused the injury and if successful, the costs of rehabilitation, care, equipment and loss of earnings are all paid for. However, there are many thousands of people who have the same needs but are reliant upon the NHS and statutory services to provide the support that they need. With budget cuts and financial constraints, it is inevitable that not all needs can be met. So, as we reflect on Brain Awareness Week, let us all consider what more we could do to help. Volunteering, fundraising, signposting, helping to educate people about brain injuries or just having time to sit and listen are all critical factors in helping those with a brain injury to enjoy a better quality of life. For a full list of fundraising activities and volunteering opportunities at Neurosupport please contact Carolyn Garlick on Carol Hopwood is the Head of the Brain and Spinal Injuries Team at Slater and Gordon Lawyers Liverpool Glance sponsored by Slater and Gordon Lawyers 3

4 From front page: Liz celebrates award win Neurosupport volunteer Liz Tunnicliffe was a very deserving winner at the recent Lord Mayor's Getting Involved Awards Ceremony, where she picked up the award for Making A Difference in the Community. Liz has been a Volunteer at Neurosupport for seven years and is a very valued and appreciated member of the team and we are delighted that her commitment and dedication to volunteering has been recognised with this award. We re really proud of you Liz, well done from everyone at Neurosupport! Fundraising is a Marathon for Claire... Clare Plowley is training hard after deciding to take on her very first Marathon, in Edinburgh this May, to raise funds for Neurosupport. She's doing all this to say thank you for the help that our Information and Advice Service gave to her mum following a diagnosis of Syringomyelia, a rare condition that affects the spinal cord. Big-hearted Clare has already raised an incredible 2,500 and the total is still rising. This is an amazing amount to be raised by one person and we think a bit of a record for our charity as it's all from one event! Good luck on the day Clare and a huge thank you from everyone at Neurosupport. You can read more about Claire s reasons for fundraising for us, keep up to date with her progress and show your support on her Just Giving Page: Are you claiming DLA? Those who are, will have already heard about the arrival of Personal Independence Payment (PIP). If you live in one of the affected postcode areas, including CH & L, and your fixed term DLA award is due to end on or after 6th April 2015 you will have received an invitation to apply for PIP. February 2015 saw the final rollout of PIP to the remaining postcodes not already covered, for those on fixed term DLA awards. If your fixed term DLA award is due to end on or after 13 July 2015 you will receive an invitation to claim for PIP rather than your usual renewal pack for DLA. Anyone from now on who wishes to submit a change of circumstances will be assessed under PIP and not DLA. From October 2015 everyone else still getting DLA and those who have been awarded indefinite period awards for DLA will be selected at random and invited to claim for PIP. Angela Wright, our benefits advisor, will be attending the coffee morning at Neurosupport on 11th May to help those claiming DLA understand the changeover to PIP. 4 Glance sponsored by Slater and Gordon Lawyers

5 From front page: Calling all Walkers! Our annual Snowdon Challenge is fast approaching! This year's event takes place on Saturday the 6th of June, and you can get involved either by getting sponsored to walk up the mountain or by helping us collect in the towns and villages that surround Snowdon on the day. It's 10 to register to take part; this includes a T-shirt, fundraising pack and transport to and from Snowdon. Registration for collectors is just 5, which includes coach transport. Everyone who joined us last year had a great day out and being part of the team taking on the challenge can be both rewarding and fun. Talking of teams, if you don t want to take part as an individual, maybe you could get a group of friends or work colleagues to join you or maybe the whole family would like to take part? Breathtaking scenery and plenty of fresh air is guaranteed and sitting on top of a mountain to eat your picnic is hard to beat. Just imagine the photos you will be able to post on Facebook, Twitter or Instagram! If you d like to register to take part, or would like more information, contact either Jo or Paula on or register online at: ACTION FOR BRAIN INJURY DAY On Friday 22nd May, between 11am and 3pm, Headway Liverpool and the Merseyside Brain Injury Rehab Centre will be celebrating their third joint 'Action for Brain Injury Day' at Neurosupport. This free event will be opened by the Lord Mayor of Liverpool and a performance by St Austin s Catholic Primary School Samba Band. Stalls, Refreshments, Information and Grand Raffle! Stanley Ambrose of BBC Radio Merseyside s Folkscene will be attending and playing. There'll be presentations by neurological experts, along with a return of the ever popular Experts by Experience Panel For further information headwayliverpool@hotmail.co.uk Mobile: Glance sponsored by Slater and Gordon Lawyers 5

6 Tuberous Sclerosis Association Meeting at Neurosupport Every month around ten babies are born in the UK with Tuberous Sclerosis Complex (TSC). This genetic condition can lead to growths in various organs of the body, but those more commonly affected are the brain, eyes, heart, kidney, skin and lungs. People with TSC may also develop epilepsy, learning disabilities, autism spectrum disorder and renal problems. The growths may be referred to as tumours but they are not cancerous, it is mainly because of their size and where they are in the body that complex problems can arise. Some individuals will be diagnosed with TSC very early in life whilst others may not be diagnosed until later childhood, adolescence or adulthood. Some people are mildly affected and experience very few problems. Others may be more severely affected and this can become apparent in childhood or adulthood. The Tuberous Sclerosis Association (TSA) are the only UK charity dedicated to providing support services, medical research and also campaigning for the rights of people with TSC. Caring for the Carers Do you provide emotional, physical or financial care to someone with a terminal neurological condition? Being a carer can be very stressful. Increasing your ability to take greater care of yourself may help you to stay resilient and healthy in the face of stress. Kate Diggory, a PhD student at Liverpool John Moores University, is exploring an on-line training programme as a way of helping carers to do this. She's looking for carers who would be willing to complete a short questionnaire to help with her research. If you would like to take part please follow the link below for further information: Do You Need a Room for a Meeting or Conference? Why not book one of the modern meeting rooms at Neurosupport and help fund our activities? All income raised from our room hire goes directly to underpinning the vital work we do supporting people with neurological conditions. Neurosupport provides the best in up-to-date and accessible rooms for hire. We can accommodate groups of 2 to 100 people and are fully equipped with the latest in audio-visual & multimedia technology. Our building is centrally located with good transport links. We offer a small amount of on-site parking and plenty of space for Blue Badge holders. To find out more, contact Chris Wall, by meetings@neurosupport.org.uk or tel: The next meeting of the TSA is at Neurosupport on Tuesday May 12th from 10am - 12 noon. For more information please contact Tanya.darnton@tuberous.sclerosis.org.uk Tel: Or visit the TSA website: 6 Glance sponsored by Slater and Gordon Lawyers

7 TEA, COFFEE & COMPANY MORNINGS IN APRIL & MAY There is no formal Tea, Coffee & Company morning at Neurosupport in April due to the Easter Bank Holiday. However, staff will be available on Mon 13th April to meet with people, or join our Sefton team at Southport on Wednesday 1st April, or at our Bootle Coffee Morning at Tea & Empathy Monday April 13th pm. The May coffee morning will be on Monday 11th May at Neurosupport, again changed due to the Bank Holiday. Don't miss new issues of Glance Get Neurosupport's latest news delivered free, straight to your inbox. Sign up online today at: Follow Neurosupport on Twitter and Facebook Neurosupport Diary April 2015 Wednesday 1st Welfare Benefits Advice 1-4 pm* Merseyside Spinal Injury Group 3-5pm Obsessive Compulsive Disorder Support Group 5-7pm Wednesday 8th Welfare Benefits Advice 1-4pm* Friday 10th Parkinson's UK Support Group 2-4pm Carer Advocacy Drop-In 1-4pm Wednesday 15th Welfare Benefits Advice 1-4pm* Friday 17th Carer Advocacy Drop-In 1-4pm Monday 20th Alzheimer's Society Support Group 2-4pm Tuesday 21st Neurosupport Craft Club pm Wednesday 22nd Welfare Benefits Advice 1-4pm* Monday 27th Brain Tumour Support Group 1-4pm Wednesday 29th Welfare Benefits Advice 1-4pm* * Appointments only. Call Neurosupport on Glance sponsored by Slater and Gordon Lawyers 7

8 Neurosupport Diary May 2015 Friday 1st Parkinson's UK Support Group 2-4pm Wednesday 6th Welfare Benefits Advice 1-4 pm* Merseyside Spinal Injury Group, Care Needs Seminar, open to all 3-5pm Obsessive Compulsive Disorder Support Group 5-7pm Monday 11th Tea, Coffee & Company Morning, PIP talk pm Tuesday 12th Tuberous Sclerosis Support Group 10-12pm Wednesday 13th Welfare Benefits Advice 1-4 pm* Monday 18th Alzheimer's Society Support Group 2-4pm Tuesday 19th Neurosupport Craft Club pm Wednesday 20th Welfare Benefits Advice 1-4 pm* Thursday 21st Frontotemporal Dementia (FTD) Support Group 1-3pm Friday 22nd Action for Brain Injury Day 11-3pm Monday 25th Brain Tumour Support Group 1-4pm * Appointments only. Call Neurosupport on The Diary may be subject to change. Please contact the Neurosupport Centre to confirm. About Neurosupport Neurosupport offers practical and emotional support to people with neurological conditions and to their families, friends and carers. We aim to: Raise awareness and understanding of neurological conditions Empower individuals and families to manage their conditions and realise their full potential Facilitate neurological charities to work together to optimise opportunities Be a self-sustaining organisation For more information contact the Centre or see our Website - neurosupport Norton Street, Liverpool L3 8LR Tel: Fax: info@neurosupport.org.uk Website: Charity No: Glance is available in large text or braille on request Glance is available on the Neurosupport website: If you wish to be added to the Glance mailing list, please contact the Information Officer using the telephone number or above. Neurosupport does not necessarily share all of the views or opinions expressed in Glance. 8 Glance sponsored by Slater and Gordon Lawyers