HEADLINES. Thank you for your support

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1 Thank you for your support TEXT GIVING You can make an instant one off donation by texting HEAD18 5 to There is no additional charge for this service. Thank you to all our volunteers and everyone who has recently donated to Headway Hertfordshire. Your continued donations allow us to carry on supporting people affected by acquired traumatic brain injury, their carers and their families. With thanks to our partners... With special thanks to our printers, Protek, who kindly print our newsletter free of charge. HEADLINES Spring 2014 In 2002 Sam Robinson was diagnosed with a giant craniopharyngioma a brain tumour derived from tissue in the pituitary gland. Now aged 26 he has undergone five surgeries and suffered from a stroke. Luckily Headway Hertfordshire has been there to help. What happened? I was presented with the symptoms of my brain tumour for a long time being very short and having very late development, recalls Sam. One day after suffering from mild headaches for a while I got a very bad headache and was vomiting and got rushed to A&E from town to the Lister Hospital where I had a CT scan and was then rushed to Addenbrooke s where I was given my diagnosis.. Full story continued on pages 8, 9 and 10

2 Our Services and contact details Fundraising News Headway Hertfordshire s services are designed to meet the needs of people affected by brain injury and their carers. Our services include: Information, advice and support to access other services. Self-help guides and materials to help you understand brain injury. Home and hospital visits we will help you identify what you want to do, plan how to achieve your goals and provide support along the way. Community based groups and activities. Peer support. Volunteer-led activities and outings. Support for carers and education workshops. Counselling for people with brain injury and/or their carers. Vocational skills workshops. Support to prepare for and access, work, training, volunteering or activities that help improve physical or emotional wellbeing. Visit our website at Or telephone: Or enquiries@headwayherts.org.uk Or write: 30 Campus Five, Letchworth, SG6 2JF MBA s Little Helper s Claire and Laura Russell, carers for their Dad Ian, have raised over 2,500 for Headway Hertfordshire. They say Headway Hertfordshire is a charity close to our hearts. Two years ago our Dad was involved in a serious motorbike accident which left him with severe long term brain damage. We are now his full time carers and without the amazing help and dedication from Headway, with their knowledge and experience, we would have been totally lost. Supporting this charity is something we are so enthusiastic about and it means so much (to a lot of people) to be able to give something back. Work colleagues of Claire and Laura, together with their employers MBA; Thorne Group; CQS and Boots gave wonderful support. MBA had bakes sales, raffles, a quiz night and they all did the Santa run, pictured below. 2 11

3 A Client s Story Welcome It helps me to identify issues as a result of my brain injury and gives me mechanisms of how to combat these and get back to work. Headway Hertfordshire provides tools such as the online programme COGMED to aid concentration and memory. It is great, it gives you a series of mental puzzles and tasks, says Sam. I haven t finished the programme yet but some of my peers have and they say how they have really felt the benefits from it, so I am looking forward to finishing. From January 2014 Sam has been volunteering at Headway Hertfordshire. Recently I have been drafting a letter to local companies and organisations asking if they will be willing to participate in fundraising activities. Headway has helped me no end really, and I would highly recommend to anyone with a brain injury, the help and support the staff and volunteers have given to both me and my family. We are delighted to welcome Andrea to Headway Hertfordshire. Andrea has joined us as a volunteer fundraiser. She will be organising community events and activities to help us reach of fundraising target for this year, which is 12,500. This money will be used to continue the delivery of our counselling service and to set up new peer support activities, throughout the county. If you would like to help Andrea raise funds for us, please do get in touch. Save the date: Our AGM this year will be held at the Fairway Tavern, Welwyn Garden City, on the 8th July. A buffet lunch will be provided. We would love you to join us so please save the date. More details will follow. Karyn Jones, Chief Executive Headway Hertfordshire is a Company Limited Guarantee, registered in England and Wales, number Registered address: 30 Campus Five Letchworth SG62JF. 10 3

4 Current Benefit Problems As many of you are aware, we are undergoing a vast change within the benefit system, and as with most change, there are problems along the way. We are concerned about the delays in PIP and ESA. I have helped clients to claim PIP and I am aware that some are still awaiting for a decision nine months on. The waiting time is due to clients waiting for an assessment from ATOS who at present have 123,000 claimants awaiting assessment. Headway clients who receive disability living allowance will eventually be transferred on to PIP, but you will be notified of this and invited to claim the benefit. If you have any concerns about this please consult myself or any member of Headway staff and we will help you. There are a number of carers who are waiting for PIP claims to be processed so that they can get Carers Allowance and this can affect a claim for Income Support by the carer. Most claims are taking longer so the carer is losing the right to Income Support. There are problems with the tougher sanctions regime for jobseekers and those who are in the WRAG (Working related Activity Group) of ESA. If any of you are concerned about attending an ESA assessment, we will do our best to accompany you or talk it over with you. A Client s Story My motivation, concentration and memory are not as good as they used to be. I find it hard to sit down for any length of time and do anything unless it s something I have to do for work like write a document, says Sam. Emotionally it sets me back every time and getting back on my feet again is very frustrating. Help at Headway Hertfordshire Living with brain injury changed for Sam when in 2012 he found help at Headway Hertfordshire. Headway have helped me no end really. I attend a group there every other Monday called HABIT which stands for Having Acquired Brain Injury Together, Sam explains enthusiastically. It is great for my self-esteem because I get to talk to other people there about the issues they re having and quite often they re similar to mine so it s nice to meet people in a similar scenario. There is a lady called Annette Ward who runs the HABIT sessions and often gives us presentations on the brain and how different parts of a brain might be affected from surgeries. 4 9

5 A Client s Story Current Benefit Problems. Continued from front page Sam underwent emergency brain surgery. Remarkably, he made an amazing recovery and achieved ten GCSE s whilst ill, read Biomedical Sciences at Newcastle University and became a teaching assistant whilst training for a PGCE. Unfortunately after ten years, Sam s tumour returned. Since the surgery in 2012 Sam has undergone two further operations and recently suffered a stroke. All went well but there was some unexpected hidden damage: back home in Letchworth, he was left with cognitive and physical problems. I have something called Homonymous hemianopsia, which means I cannot see much with my left eye, which has resulted in me not being able to drive anymore. I gained a lot of weight from my surgery in 2012, which I wasn t aware would happen and I have no sense of smell. I also have something called Hemiparesis, which means I have a slight paralysis in my left hand side. For Sam the cognitive issues are the most infuriating. The introduction of the Universal Credit (which will replace Child Tax Credit, Housing Benefit, income-related ESA, income-based JSA, Income support and Working Tax Credit) has now been delayed and it is possible it may not be introduced until Written by Margaret McCann, Headway Hertfordshire, volunteer. New Support Groups General News We are pleased to announce we are now running the following: Welwyn & Hatfield District Carers Support Group This is a chance to meet other carers in a supportive environment. The group meets monthly on a Monday. St Albans District Coffee Morning Welwyn & Hatfield District Coffee Morning The coffee mornings are held on alternate Thursdays. If you are interested in any of these new groups please call the Headway Hertfordshire office on for more information. 8 5

6 St. Albans Charity Ride St Albans Charity Ride Headway Hertfordshire is entering a team of three to the St. Albans Charity Cycle Ride on May 18 th, but the whole team is raising funds on the back of their efforts. Our cycle team, Glenn, Nick and Richard, are already training for their 40 mile ride and, together, we hope to raise With this money we will provide counselling services to people who have suffered a recent illness or accident which has resulted in a brain injury. This is a vital service to our clients and their carers, and one for which we have little funding this year. Glenn, Nick and Richard s efforts will therefore make a real difference to people in Hertfordshire whose lives have been devastated and will never be the same again. Something, which many of you have experienced. You can donate online by going to Thank you so much for supporting our Cycle Team and Headway Hertfordshire. (From left to right Glen and Richard) headwayhertfordshire This cycle ride comes at the end of Action for Brain Injury Week and so please give generously if you can. 6 7