The #ShineUKCharity awards have started :) Everyone is getting ready for the #ShineUKCharity AGM :) See you there! Shine is a community of 75,000 individuals, families, friends, and professionals, sharing achievements, challenges and information on living with hydrocephalus, or spina bifida, and related issues. Are you any good at table football? Q: What do YOU love best about cooking and what do you LIKE least? :) What's your favourite food to cook at home? For more information please visit www.shinecharity.org.uk/Shine40Plus :) Find a #ShineUKCharity event near you! VISIT: www.shinecharity.org.uk/events Remember to visit our website www.shinecharity.org.uk for our latest events! Text GOUL22 then £1, 3 or 5 to 70070 :) #ShineUKCharity BIG thank U 2 everyone who took part in #SpinaBifidaAndHydrocephalusAwarenessWeek :) #ShineUKCharity Don't forget to share YOUR snaps of YOU wearing yellow with us this evening! #ShineUKCharity 1000's of ppl are helping #ShineUKCharity raise AWARENESS 4 #SpinaBifida and #hydrocephalus today, by wearing yellow! There are endless ways to show your support for #ShineUKCharity #SpinaBifida #Hydrocephalus You can never wear too much yellow! #ShineUKCharity Q: Where will YOU be wearing yellow today? Raising awareness for #SpinaBifida and #Hydrocephalus #ShineUKCharity If you are wearing YOUR yellow today, we'd love to see your snaps! #ShineUKCharity #SpinaBifida #Hydrocephalus Who's wearing yellow today then? :) #ShineUKCharity #SpinaBifida #Hydrocephalus Shine Lifelong Opportunities Weekends! Find out more by visiting: www.shinecharity.org.uk #SpinaBifida #Hydrocephalus #IIH Shine Lifelong Opportunities Weekends! Find out more by visiting: www.shinecharity.org.uk #SpinaBifida #Hydrocephalus #IIH

Cambs 0-5 years support group @PeterboroughTel @PeterboroughCC #SpinaBifida #Hydrocephalus

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Event Date/Time: November 26, 2014 10:00AM – 12:00PM
Location: Shine HQ, 42 Park Road, Peterborough, PE1 2UQ

A support group for parents/carers of children aged 0-5 years who have spina bifida and/or hydrocephalus/IIH.

Come along and enjoy a cup of coffee or tea whilst the children play.

Commenting, Shine Support and Development Worker, Sharon Lapsley said:

“This is a great opportunity to meet other parents. In addition a Shine Support & Development Worker is on hand to discuss in confidence any issues you may wish to raise.”

Parking is very limited at Shine but there is a Pay & Display car park located very close to our offices.

  • Event: Shine Event
  • Event Type: Social
  • Event Cost: Free

For more details contact Sharon Lapsley by T: 01536 400959, E: sharon.lapsley@shinecharity.org.uk or via Facebook.

Our social media is more alive than ever! @CivilSocietyUK @CharityDigiNews

If you search ShineUKCharity on ANY social media - You WILL find us!

If you search ShineUKCharity on ANY social media – You WILL find us!

Our social media channels have been more alive than ever with messages, news, and photos in recent weeks. Not only is it a great way for you to see what the Shine community is getting up to, but people are even starting to donate, raise awareness, and seek health advice on social media too.

Robin Barnatt’s social profile - Robin is a dab-hand at social media and even organises Google Hangout sessions for people to discuss health issues online. Why not friend him on facebook or tweet him a question? facebook.com/Shine.Robin.Barnatt and @ShineRobinBarnatt

AudioBoom - Have you heard @TomScottShine on @BBCCambs talking about the Ice Bucket Challenge? Listen again at W: audioboo.fm/ShineUKCharity

YouTube – The Shine YouTube channel is growing with ever passing month! We’ve now got a range of informative, educational and fun videos for you to enjoy! Visit: youtube.com/user/ShineUKCharity

If you need support to get involved, please connect with Shine’s Media Development Officer Darren Fower on facebook.com/Shine.Darren.Fower or E: darren.fower@shinecharity.org.uk or T: @DarrenFShine or even on LinkedIn!

‘Mindfulness’ includes meditation, exercise, food, work, and education @Uniwestminster

Mindfulness

You may have come across the term ‘mindfulness’ recently and wondered what it is all about. The word seems to be applied to a variety of different topics including meditation, exercise, food, work, and education.

Members who attended the Shine40Plus conference earlier this year are more familiar with the term, thanks to Dr Trudi Edginton, Senior Lecturer of Cognitive Neuroscience at the University of Westminster, who was a main speaker at the event. Trudi’s presentation stirred up a real interest in mindfulness, leaving many Shine members wanting to practice it themselves.

Mindfulness is said to change the way we think, feel, and act. It is a process in which the person practising mindfulness is encouraged to increase their awareness of one moment becoming another moment, enabling more consciousness of thoughts, feelings, bodily sensations, and the surrounding environment.

Trudi begins by explaining that mindfulness is not a single thing, but ‘a collection of techniques which people can use to become more aware of the present moment’. This idea of becoming more involved in what is happening in the here and now is central to this way of being. Trudi elaborates: ‘By either thinking of the past or focussing on the future, we may not actually experience the present moment. So, mindfulness is about coming back to the present moment and trying not to worry about the future or focus too much on the past.’

Misconceptions

As with any new concept which sweeps the world via the internet, there are versions of mindfulness which have strayed from the original purpose. According to Trudi: ‘One of the most common myths about mindfulness is that you have to empty your mind – that’s actually quite difficult to do – and you don’t have to relax either.

‘Through the self-awareness mindfulness brings, we can realise that we aren’t actually our thoughts; for example, having a negative thought doesn’t have to define you … It’s all about choice and awareness, and paying attention, as opposed to emptying your mind.’

Further to this, there is the idea that mindfulness is intended to bring about a nirvana-like experience, but Trudi is keen to correct this misconception: ‘Mindfulness is very much about being, not striving, not trying to change anything, but just being aware of things. It’s very … very accepting and just about managing your experience on a day-to-day basis; it’s quite a gentle approach and this often surprises people when they come to it.’

Mindfulness – real change

In response to those who are sceptical about techniques like mindfulness, thinking they are a bit ‘out there’ or unscientific, Trudi points out that research is proving its real effects.

‘Mindfulness interventions are linked to very real changes in the brain itself, and the particular parts of the brain that change and grow are the ones that help us with our emotional wellbeing.’

In addition to this, she says, regular mindfulness practice can also lead to a reduction in some of the stress hormones in the body, and this reduction can in turn strengthen your immune function.

When mindfulness may not be appropriate

One important, and sometimes neglected, factor is that there are times when mindfulness might not be right for you at a particular time in life. As Trudi explains: ‘If someone is feeling very depressed, it might not be the right time for mindfulness when difficult emotions or thoughts might be arising, so it’s important to have effective guidance and support if you are thinking of trying mindfulness – there are lots of very good mindfulness instructors and courses available.’

Mindfulness and hydrocephalus and spina bifida

Through her work with people with hydrocephalus and spina bifida, Trudi and her colleagues are very aware that some people experience memory difficulties, problems with organising, and planning ahead. Interestingly, Trudi says that this can sometimes lead to people experiencing high levels of anxiety…’It can be difficult to feel confident and comfortable if you’re not quite sure what is going to be presented to you in the future.’

The Shine members to whom Trudi has introduced mindfulness have found it really beneficial. She says they report ‘feeling quite grounded and comfortable with their body, and became comfortable with some of the experiences they had in the moment, so it can be a useful technique in terms of managing stress and negative emotions.’

Government changes to the ‘statementing’ process in England

EHCplan

So what do we know so far?

  1. As part of the Children and Families Act, changes are being made to the way children with special educational needs are being supported. These changes include gradually transferring children and young people from statements to EHC Plans (Education, Health and Care plans). This will require Local Authorities and Health bodies to work in partnership. Local Authorities will also publish a ‘local offer’ of services, to provide information on what services children, young people, and their families can expect from a range of agencies.
  2. EHC plans will encompass children and young people in education who require additional support and/or training up to the age of 25. This will ensure that education and training providers will have a duty to meet additional needs for those children or young people who have an existing statement and who wish to go onto further education or training.
  3. EHC plans will only apply to children and young people who are (or would be) ‘statemented’. Families will be entitled to request the support of an Independent Supporter to help them through the process.
  4. EHC plans are being phased in over the next 3 1/2 years. This means that if your child currently has a statement, the arrangements in the statement will continue until your next Annual Review.
  5. The Children’s and Families Act states that Local Authorities need to take the views of children and young people with special educational needs and disabilities and their families into account, particularly in relation to the support they are given.

Further information

Shine’s Education team in England will be building up their knowledge and expertise of EHC plans, offering specialist support and advice on how you can get the best out of the new process to support your child’s education and training. A number of organisations across England have been funded by the Government to play a role in reforming and delivering services for disabled children, young people with special education needs, and their families. All Local Authorities must have an Information, Advice and Support Service for special educational needs and disabilities (SENDIASS) to provide information on the changes and processes, and Independent Supporters if requested.

Contact details for organisations in your area are listed on the Council for Disabled Children website W: councilfordisabledchildren.org.uk

Special educational needs in Wales

Wales is proposing changes to the law covering special educational needs (SEN) which will apply to young people up to the age of 25. As yet, there is little detail on the changes or the timescale for their introduction, but we will be keeping a watchful eye! Contact us for more information about Shine’s Education Team on T: 01733 555988

Welcome Baby Bella Bear!

Bella Bear

Benny has a brand-new friend!

At last the day Benny has been waiting for has come – Baby Bella Bear has been born!

Young Together readers chose the name for this unique baby before she was born this Summer, and Benny is very excited because he now has a little bear friend to share his life with.

Bella Bear is already eight weeks old, and last month she came home from hospital to start enjoying life with her mummy and daddy.

Like Benny, Bella has hydrocephalus and like many members of Shine she also has spina bifida. We are sure that together, Benny and Bella are going to have lots of exciting adventures and help each other whenever they can.

Because Bella has spina bifida, some special things happened to her after she was born. When you have spina bifida it often means your back has a little open place when you are born.

So, some very clever doctors did a special operation to help mend Bella’s back and help it close up. If you are a little boy or girl with spina bifida then this probably happened to you – you might even be able to find your special scar.

Because Bella is so tiny, she didn’t really know anything about the operation, she just wanted to be back with her Mummy for a cuddle as soon as she could. A few days after the operation on her back, Bella had another
operation, this time for her hydrocephalus. Some more clever doctors and kind nurses put a shunt into Bella’s head, which will help her live with her hydrocephalus. If you are a little boy or girl with hydrocephalus you might already know about shunts and have one yourself, just like Benny and Bella.

After Bella had her operations, Benny was told he could go and see her for a very short visit in the hospital. He couldn’t wait, especially when he heard that Bella had a shunt just like him. He wanted to tell her not to worry,and that living with a shunt was easy-peasy most of the time. Benny thought hard about what to take Bella for a present, and then had the greatest idea…what about her own Benny Bear? Yes, Bella could be an extra special member of the Benny Bear Club!

Although Bella was a bit too little to understand how special it is to be a Benny Bear Club member, Bella’s mummy was thrilled and told Benny what a kind bear he was. She put the little Benny Bear toy in Bella’s hospital cot.

Benny felt very happy – he had pleased Bella’s mum and he also had a brand new friend! He loved all his other friends of course, but somehow he knew that Bella was going grow up to be his very best friend forever and ever.

If YOU use #eBay – we need YOUR help plz! #SpinaBifida #Hydrocephalus #eBayFavouriteCharity

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To kick off the holiday season, eBay have announced the return of the My Favourite Charity campaign. Throughout November and December, they’re counting the number of eBay users who select their favourite charity.

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Cash prizes are on offer for the top charities:

  • First place: £7,000
  • Second place: £3,000
  • Third place: £2,000

Plus, anyone taking part could win in a £250 prize draw!

So, if you do use eBay or simply have an account, please CLICK HERE and select Shine as YOUR favourite charity by clicking “Save as favourite” on the eBay for Charity page!

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Benny Bear Books for YOUR tablet, kindle or mobile device! @CivilSocietyUK @CharityDigiNews #Hydrocephalus

Benny Books

Benny Bear is a special bear, he has a shunt to help treat his hydrocephalus and loves to play games, go to school and make friends.

“These are stories about a special bear with a shunt but lots of girls and boys have shunts too. Perhaps you are one of them.”

To download the stories NOW please CLICK HERE!

To find out more about Benny Bear please visit www.shinecharity.org.uk/BennyBear

Palm Tree Cottage @DisabilityNow

Palm Tree

by Michael Jones

It is very difficult to find suitable accommodation with disabled access. I recently spent some time searching for somewhere, and was pleasantly surprised when I discovered the Palm Tree Cottage in Shoreham-by-SeaWest Sussex.

The adapted cottage has fantastic facilities all round: the beds are laid out with a wheelchair in mind, there’s a wheelchair-accessible shower room, and an accessible toilet with lift bars.

The cottage is very close to the beach, and there is a wooden ramp onto the beach too. Plus, the owners helped out when we needed anything.

For more details, visit their website by CLICKING HERE!

#SpinaBifida and #Hydrocephalus can have a big impact on life!

GillYaz

Shine’s Health Development Manager, Gill Yaz, on some common concerns.

Spina bifida and hydrocephalus can have a big impact on life. Working, driving, and relationships can sometimes seem more complicated, and I’m often asked ‘When is the best time to tell people about my condition?’ Well, it depends on what you want to do.

Work

It’s now against the law for all employers (except the Armed Forces) to discriminate against disabled people. The Disability Discrimination Act defines disability as ‘a physical or mental impairment which has a substantial and long-term adverse effect on the person’s ability to carry out normal dayto-day activities’. Not everyone with hydrocephalus or spina bifida occulta would feel their condition has a significant impact on day-to-day activities, so you will have to decide whether this Act applies to you. Employers are only allowed to ask for limited information on your health or disability during recruitment, and it has to be relevant to the job you’ll be asked to do. However, you need to be honest with yourself and your potential employers, about whether the job itself is within your capabilities; maybe, discussing your application with someone who knows you well beforehand can help.

If you are going to need ‘reasonable adjustments’ to be made to the job itself, such as working hours, or the workplace itself (such as needing to be near the loo, or a desk in a quiet area), you will need to tell your employer about your disability. You can suggest the changes which will help you succeed, or you can ask for Occupational Health Officers to help. Do consider sharing with someone if you have a shunt in case of an emergency at work, but make sure they know that this is unlikely to happen or they may worry needlessly.

Driving

You must tell DVLA if you have a condition which may affect your driving, and these include hydrocephalus, spinal problems, and sleep apnoea. The Medical Assessment form will give DVLA the information they need to decide whether you can drive, and for many people the answer will be ‘yes’. You need to inform them if you have had any head surgery, such as a shunt revision, whether your consultant tells you to or not. Your licence will usually be surrendered for six months and you will need to reapply for your licence back at the end of this time. The reason for this is that head surgery can lead to blackouts or seizures during recovery which could put you or other road users at serious risk. Drivers are always responsible for ensuring they are fit to drive – if you have an accident because you are tired or feeling unwell, you will be held accountable. There are heavy fines for not telling DVLA about your health. More information can be found at http://www.gov.uk/healthconditions-and-driving

Relationships

I often get told of people’s anxieties around how much to tell about your condition when starting new relationships. My advice is always the same – take your time, get to know one another properly, and when you feel that you are relaxed and comfortable and in a trusting relationship, then the time will feel right. In the meantime, answer any questions honestly, giving as much information as you’re happy to at that time. It’s your body, you’re in control. By and large, the details of your bowel regime or whether you can have babies are not the stuff of successful first dates. Concentrate on your partner, and find out about them, you’ll then worry less about what impression you’re making. People have told me they worry about their body, that people will find their scars or stomas a turnoff. Again, get to know each other. Most people aren’t so superficial that this will matter if they really care for you.

Schools

For young children, I get asked whether the whole school should be told about their incontinence so they ‘understand’. The answer to this is ‘no’. Concentrate on getting their bladder and bowel management as good as it can be, as young as possible. Don’t be fobbed off with ‘we’ll do something later’ from your healthcare professionals. Children with bowel issues are more likely to develop selfesteem/ anxiety issues, and challenging behaviour. Bladder and bowel management is private, and ownership of what information is given and when needs to stay with the child. Once the information is ‘out’, it can’t be taken back.

Don’t forget that you can now connect with Gill Yaz, our Health Development Manager on Facebook by simply CLICKING HERE!

Are you a parent or carer in #Oxfordshire @Healthtalkorg @Uniofoxford

HealthTalk

Are you a parent or carer of a child with a long-term medical condition or disability who has been ill with a flu-like illness?

Do you want to share your experiences to help others? http://www.healthtalk.org is a website about people’s real experiences of health and illness. We are looking for PARENTS with children who:

  • Are 12 and under
  • Have been ill with a flu-like illness
  • Have a long-term health condition or disability:
  • Lung condition (e.g. asthma)
  • Heart condition
  • Kidney condition
  • Liver condition
  • Diabetes
  • Cancer
  • Immunocompromised (e.g. HIV)
  • Neurological disability (e.g. cerebral palsy)

Taking part would involve being interviewed about your experiences of your child being ill with a flu-like illness, including managing the illness, consulting the doctor, the impact on the family and the family’s information and support needs.

The aim of the research is to create an information resource that can help others who might be in a similar situation. We also hope it will be used to improve health professionals’ understanding and support for parents and families.

For more information, please contact our researcher Ulla. If you decide you do not  want to take part – no problem!

E: Ulla.Raisanen@phc.ox.ac.uk
T: 01865 289328

Study approved by Berkshire Research Ethics Committee 12/SC/0495 – Nuffield Dpt of Primary Care Health Sciences, University of Oxford, Radcliffe Observatory Quarter, Oxford, OX2 6GG

World Spina Bifida and Hydrocephalus day!October 25th, 2015
11 months to go.

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