CHESTERFIELD & NORTH DERBYSHIRE TINNITUS SUPPORT GROUP 34 Glumangate, Chesterfield, S40 1TX Tel: 01246 380415 Philip Wheelhouse (Committee Member) Email: [email protected] Website: www.tinnitussupport.org.uk Newsletter:- November/December 2014 Edited by Audrey Carlin PARTY TIME at the Tinnitus Group Thursday, 4th December 2014 to be held at FAIRPLAY 1.30 –3.30 (see flyer for further details) Details of how to get there are also enclosed. Do come along and join us for a “happy” afternoon. A short profile of each of our members will be included in our next newsletter. We’re so Happy!! Thank you to everyone who voted for the Tinnitus Support Group in the Lloyds Bank Community Fund. We have been awarded £3,000 – the top amount. Three other voluntary groups also made application in the Chesterfield area, but with your tremendous support, we achieved 52.1% of the votes. Thank you to everyone who supported us. within the NHS. Donation Thank You We thank Chesterfield General Charitable Fund for their generous donation to our group of £1,000 which is towards our next Conference to be held in April 2015. However, they are making decisions to ensure there will be health care for us in the future that will be of high quality. Annual General Meeting – 17/9/14 Our AGM was well attended and below is our newly elected committee. Lindsay Knott (Chair) Audrey Carlin (Secretary/Lay Counsellor) Joanne Gordon (Treasurer/Co-ordinator) Muriel Lascelles (Committee Member) Joy Lunn (Committee Member) 1 After the AGM, Pam Purdue who is Head of Engagement, North Derbyshire CCG came along to talk to us about some of the changes The Clinical Commissioning Group (CCG) is a health organisation that buys services on our behalf for example from – Chesterfield Royal Hospital, district nurses services, health services, ambulance service. They have to ensure that they make the best use of the money available to them and of course money is very tight at the moment and will get worse. It is predicted in 3 years’ time there will be 3 million people in this country with a long-term condition. All the conditions need support of health care professionals and medication. They do not have enough money now to pay for everything they would like to provide and in the future this will reduce. Adding to the problems is the fact that there are not enough people trained to meet the demand – GPs, nurses and other staff. Pam informed the meeting that the main causes of death are stress, cancer and heart disease. In 2012 public meetings were held around the county to share the challenges that are creating the need for change. They listened to the views of the public who gave them feedback on the principles that should be used to make the decisions about future service changes. Guiding Principles: All services will be person-centred Care will be provided flexibly Assumptions will be challenged People will be treated with dignity and respect They will plan and deliver services in partnership Healthy lifestyles will be promoted GPs are the gateway into other services The public also told the NHS that • We want to be discharged from hospital quickly • We want to be able to get an appointment to see a GP when we need to see one • We want to be treated as close to our home as possible or in our own home • We don’t want to go into hospital unless it is absolutely necessary • We want to come out of hospital as soon as we’re fit enough to do so Pam went on to say that there are opportunities to do things differently, for example: 2 o Developments in technology eg prescription monitors, use of telephone landlines and apps on mobile phones to measure things like glucose levels o Technology can remind you to take your medication o Blood glucose – take your blood each morning, report the outcome and someone is able to maintain your condition o Reduction in the size of medical devices mean they can be used outside hospital o Dialysis machines – patients used to go into hospital, now this can be done in their own home o Developments in research to improve patient care They are working on the development of care plans that will help people in a way in which they wish to be supported and one of the services they may call upon is that of the voluntary sector. This is why we, at the Tinnitus Group, thought it important to find out what the NHS is planning for our future. There will be more meetings soon to inform us about what is likely to happen so as a support group we intend to go along to the meetings so we can report back to you. Meeting with Pete Newby, Development Worker for Voluntary Sector Single Point (Vspa) On the 9th October 2014, our newly formed committee, met with Pete Newby, who was unable to attend our members’ meeting September. on the 17th Pete works for NDVA as the Development Worker for vSPA which covers North Derbyshire, Hardwick and Erewash Commissioning Groups. This was launched in June. They have been commissioned to act as an intermediary between the voluntary sector and health and social care. It has been more difficult to engage GPs and health professionals because they do not know or understand what the voluntary sector does and what it is about. The vSPA telephone helpline will take referrals from health professionals, social care professionals and the voluntary sector. Their role is to match up the needs of patients who have been referred to them via health professionals, social care and voluntary sector who may be able to help them. They look at all the issues which could include advocacy support, possibly befriending, social support or possibly transport or something specific like benefits support. They will know from the database the different services that are appropriate. The Tinnitus Support Group is on their database. They do not recommend, but rather signpost people to organisations that may be able to help them by selecting what they feel is appropriate for their needs. Then they telephone the 3 voluntary sector and link the two together. Of course there may be times when they are unable to find a suitable support for the person because the appropriate service doesn’t exist in that area. They are going to put together a Needs and Gaps analysis for the CCG informing them how many times they have been asked for something they cannot put together. The committee asked various pertinent questions about Vspa which Pete answered. ****************************** The Benefits of Music By Lindsay Knott The benefits of music to help manage tinnitus was one of the (many) interesting and useful things I learnt from attending the Workshops run by our group earlier this year. One of my happiest – and happiness-inducing memories was Audrey bopping in her chair along to ‘Happy’ by Pharrell Williams. So I was really looking forward to listening to a programme on my local radio station this morning (26th October) billed as the ‘Nation’s Top Ten songs that make people feel better and happier’. As each song came on, interspersed by news and personal experiences of the effects of music – I scribbled them down. This is the result – in reverse order as they say: 10: The End is Near by Frank Sinatra; 9: The Wonder of You by Elvis Presley; 8: Billy Jean by Michael Jackson; 7: Angels by Robbie Williams; 6: Three Little Birds by Bob Marley; 5: Let it Be by The Beatles; 4: a song which I did not recognise but which the presenter walked down the aisle to; 3: Happy by Pharrell Williams; 2: Dancing Queen by Abba and number 1: Queen's Bohemian Rhapsody. What do you think of this list? Do you have your own favourite songs or other types of music (or indeed sounds) that you listen to if you aren’t feeling well or are fed up, or stressed? To be honest I was a bit disappointed; they were a little downbeat for me (and Audrey felt the same). I looked on the internet and after quite a search I discovered that A ComRes survey for BBC local radio for Faith in the World Week 2014, which is exploring the healing power of music, offered 1,000 people these 10 choices. More than two-thirds of those polled said they like listening to music when they do not feel well and nearly nineout-of-ten agreed that listening to music can make people feel better when they are sick or facing difficult times. Nothing is ever quite what it seems – Bohemian Rhapsody’s subject matter is a man's confession to a murder. And a previous poll in March 2009 which attracted thousands of listeners as part of a 6 Music special, examining the effect of music on peoples' moods and the link between mental health and music was topped by the Smiths ‘I Know it’s All Over’ as the best song for when people were ‘down in the dumps’. On a more positive note, there has also been recent radio coverage of the benefits of hip hop music on mental health. 4 It did get me thinking more though. I have songs that ‘come to mind’ or that I find myself singing without planning to at certain times. These seem to be in three categories : when I need comforting it’s ‘Everybody Hurts’ by REM or ‘Bridge Over Troubled Water‘ by Simon and Garfunkel; ‘Don’t Give Up‘ by Peter Gabriel and Kate Bush; when I feel the need to be a bit tougher it’s ‘I Will Survive by Gloria Gaynor‘; and ‘Something Inside So Strong’ by Labi Siffr and ‘Sisters are doing it for themselves’ by the Eurythmics; and when I just am - or want to be - cheerful it’s ‘Dancing in the Street’ by Martha and the Vandellas, ‘Crazy’ by Gnarls Berkley’, ‘Better Together’ by Jack Johnson or many 1970’s disco music. And two further important lessons for myself in my day to day management of my tinnitus: I need to actively listen to more music but most of all, despite my tinnitus I CAN STILL hear music in all its variety and with all its benefits. Why not share your favourite, inspiring, cheering or comforting songs (or other sounds) with other members of the group – we could do our own poll. Lindsay Knott ******************************* RESEARCH NEWS The Hearing Brain Report by Dr Dave Langers, Nottingham Biomedical Research Unit Autumn 2014 Our ears capture sound but it’s our brains which process and make sense of the sound around us. This feature highlights our work into developing a better understanding of the hearing brain. Our BRU features two research areas that focus on the role of the brain in hearing disorders. Our advanced imaging and translational neuroscience theme is working to improve methods of measuring hearing–related brain function, using Magnetic Resonance Imaging (MRI) and Near Infrared Spectroscopy (NIRS). The sensorineural Plasticity and rehabilitation theme is using these developed methods to study brain organisation in individuals with hearing disorders. In combination, the work from these themes is developing an understanding of how the brain adapts to hearing loss or deafness. It is also building our understanding of how changes in brain function are involved in a Photo - Sensorineural Plasticity and Rehabilitation number of hearing-related phenomena, such as tinnitus. We recently completed a number of MRI Studies into the structure and function of the brain. In close collaboration with the Nottingham-based Medical Research Council (MRC) Institute of Hearing Research, we carried out a comprehensive review of all existing MRI studies that looked at changes in brain shape and volume related to tinnitus. This review showed that there are inconsistent and even contradictory findings across studies. The presence or absence of hearing loss in tinnitus is one factor that has often not been accounted for. This may explain some of the 5 inconsistencies. Based on the lessons we learned, we are now working towards disentangling the effects of hearing loss and tinnitus through our own experiments to resolve this issue. Another department concerns brain function. Sound that is sent to the brain is spilt into parts, corresponding with frequency components or “pitches”. We have recently succeeded in mapping which areas of the brain process which parts of the incoming sound (the brain’s tonotopic organisation). Changes in this mapping have been implicated in highfrequency hearing loss and tinnitus. Our work will now allow us to delve further into such hearing disorders. Discussing our research with Tinnitus Support Groups By Kate Greenwell and Kathryn Fackrell During the past year, we were invited to speak at several tinnitus support groups across the country. These included Chesterfield and North Derbyshire, Manchester, St Helens, Aintree, West Middlesex and Cambridgeshire. We were invited to talk about our own research as well as other research being carried out at our unit. Meeting members of these groups has been an immensely interesting and helpful experience for us as postgraduate students. We have learnt so much about what it is like to live with tinnitus and how it can affect people’s lives. We have been amazed at how supportive the groups have been and how willing people with tinnitus are to be involved in research. We also used these talks as an opportunity to gather feedback on our future research plans. This has helped make sure that our research stays focused on topics that are important to people living with tinnitus. Finally NHBRU report on their current funding for tinnitus counselling. Funding success for new study on counselling for tinnitus We have been successful in achieving funding for developing a set of counselling tools for people with tinnitus. Led by Dr Derek Hoare, the project received £260,000 from the Research for Patient Benefit scheme which is funded by the National Institute for Health Research (NIHR). The first year of the 2-year project will involve working with patients and audiologists to find out what aspects of counselling are most important. This will lead to the creation of a care manual for audiologists to work with. The second year of the project will see the testing of the care manual in a small clinical trial at a number of NHS audiology departments. The project will start early next year. Audiology and Tinnitus Membership Evening at Chesterfield Royal Hospital on 22/10/14 Over 100 people attended the meeting at Chesterfield Royal Hospital, to which we were invited, thanks to Barry Whittleston, Public Governor for Bolsover, who attended our Tinnitus Awareness Meeting in February of this year. We were also pleased to see many of our members too. After 6 speeches by Deborah Farr, Adult Audiology Service Lead and Claire Roberts, Hearing Therapist, Joanne spoke on behalf of our group explaining the help and support we can give to people experiencing tinnitus. Deborah Farr said there are 56,500 people in North Derbyshire with hearing loss. They service 14 community locations throughout North Derbyshire. Deborah spoke mainly about people with hearing loss (not tinnitus) and their holistic care. She mentioned the Any Qualified Provider (AQP) services saying that in 2012 the CCG decided that they were going to tender audiology services. Those over the age of 55 and with a minimum criteria of hearing loss due to age, are able to have a choice. Anyone younger or with complex problems will still be referred to the hospital. Claire spoke about tinnitus, acknowledging that the knowledge of tinnitus is theoretical. She spoke about the random signals of silence in the hearing system and that the nerve fibres are firing all the time even in quiet. With tinnitus, for some people, a trigger happens and it alerts them to the presence of their own tinnitus. Some sounds are full of meaning for us; eg a fire alarm or baby crying etc. People start to tune into the tinnitus and give it lots of attention subconsciously. She continued, hearing loss can be a trigger for tinnitus as you have to work hard to hear. Even lifestyle can raise awareness of tinnitus. Claire said that positive information can help to reduce the threat and demystify tinnitus. Claire finished her speech by saying that there is ongoing support provided in Audiology for people experiencing tinnitus. They have a one-stop tinnitus service which allows patients to be seen by everyone concerned in their treatment/pathway within one appointment. Happiness by Audrey Happiness to me is one of the most important emotions – an emotion you can “spread” to others. As the song goes “Spread a little happiness”. And my favourite song of the moment is Pharrell Williams “Happy”. It makes me smile and want to dance. All the songs I like are happy and upbeat (I wouldn’t want it any other way). I decided to look up the definition of happiness and the following is from Wikapedia. Happiness is a mental or emotional state of wellbeing characterised by positive or pleasant emotions ranging from contentment to intense joy. A variety of biological, psychological, religious and philosophical approaches have striven to define happiness and identify its sources. Various research groups, including positive psychology endeavor to apply the scientific method to answer questions about what "happiness" is, and how it might be attained. The United Nations declared 20 March the International Day of Happiness to recognise the relevance of happiness and wellbeing as universal goals. In 2014 “Happy” (Pharrell Williams song) 7 became the anthem and inspired clips from around the world. The 2012 World Happiness Report stated that in subjective well-being measures, the primary distinction is between cognitive life evaluations and emotional reports. Happiness is used in both life evaluation, as in “How happy are you with your life as a whole?”, and in emotional reports, as in “How happy are you now?” and people seem able to use happiness as appropriate in these verbal contexts. Using these measures, the World Happiness Report identifies the countries with the highest levels of happiness. Meditation has been found to lead to high activity in the brain's left prefrontal cortex, which in turn has been found to correlate with happiness. With happiness in mind, here are some positive steps to happiness. o Giving – if you want to feel good, do good!. Helping other people makes us happier and healthier. o Relating – Close relationships with family and friends provide love, meaning, support and increase our feelings of selfworth. o Exercising – Being active instantly improves mood and can even lift depression. o Appreciating – Ever thought there must be more to life? There is – and it’s right in front of you. Notice the world about you. Be mindful of your feelings and stop dwelling on the past or worrying about the future. o Trying out – Learning new things give you a sense of accomplishment. o Direction – Goals motivate but they need to be challenging and achievable. o Resilience – You can’t often choose what happens to you but you can choose your attitude to what happens. Resilience can be learnt. o Emotion – Recent research shows that regularly experiencing joy, gratitude and pride creates ‘an upward spiral’. Focus on the glass half full. o Acceptance – Dwelling on flaws makes it much harder to be happy. You must learn to accept yourself, warts and all, and be kinder to yourself when things go wrong. o Meaning – People who have purpose in their lives – whether it’s religious faith, being a parent or doing a job that makes a difference – feel more in control and get more out of what they do. Lord Layard founded Action for Happiness. The Ten Keys are derived from an extensive review of the latest research on psychological wellbeing. [Published in Grace Magazine – Autumn 2014] The above Positive Steps to Happiness, together with the quote below include so many of the principles of self-help we discussed in our group counselling workshops. Happiness thoughts. is the quality of your Hill, Chesterfield. Tickets £10 available from the theatre box office (01246 271540). See enclosed flyer. My Favourite Teapot I have a favourite teapot and I just cannot record The many cheery cups of tea This old teapot has poured. When friendly guests come by to chat Upon a winter’s day, A steaming pot of fragrant tea Can chase the cold away. It must recall the happiness That it has given me By faithfully brewing for my guests Delicious cups of tea. [By Carice Williams – courtesy of Grace Magazine] What makes you happy? Please share your tips on what makes you happy. They say “happiness makes the world go round!” so we would love to hear from you. HAPPY CHRISTMAS TO EVERYONE AND A VERY HAPPY NEW YEAR TOO Marcus Aurelius And something else to make you happy – in fact, to make you laugh!! NOBODY’S FOOL A comedy by Simon Williams Performed by Chesterfield Theatre Company on the 4th, 5th and 6th December, at The Rose Theatre, Rose 8 We will be in touch again early in the New Year. Audrey