Together - Summer 2016

Summer 2016

Shine Celebrates a Golden Anniversary Year with our Royal Patron HRH The Duchess of Gloucester at Peterborough Cathedral

Shine’s Golden Anniversary is kindly sponsored by the BGL Group.

A Golden Service page 4

Prenatal Surgery in Spina Bifida page 8

Normal Pressure Hydrocephalus page 8

Celebrate with Shine! page 12

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News

Help to shape the future of Shine! … by becoming a Shine Board member. You will help to ensure that Shine is well run, meet our legal obligations and deliver even better services for our members.

Over the next 6 months, we will be seeking to appoint a new Chairperson as our current Chair, Richard Astle, will be standing down after 12 years of dedicated support for Shine.

Please help us to spread the word. If you, or anyone you know, have the skills, experience and enthusiasm to take on this role, then Shine would like to hear from you.

For more information on the Chair’s role, please visit W: www.shinecharity.org.uk/aboutus/recruitment to view the job description.

We also have three vacancies for Board members, including a Trustee to represent Northern Ireland. Two of our current

Our Voice

The Shine Adult Members’ Council evolved from ‘Your Voice’. It was set-up in 2007 to enable members to influence the direction of Shine’s work and help to shape the development of new services such as the Health Hub, surveys, campaigns, and representing Shine at key events.

Kate Steele, CEO, says ‘The group’s contribution has highlighted the value of membership engagement in helping us to get the services right. In our golden year, we will be actively working to make Shine even more representative, so look out for developments on our website, Facebook and future Togethers!’

For more information on the SAMC see W: www.shinecharity.org.uk/samc

members who were elected three years ago have expressed a desire to stand again, but any member can stand for election. At least 50% of Shine’s Board must have personal experience of spina bifida and hydrocephalus, or of supporting someone with one or both conditions. All trustees also bring relevant expertise such as social care, health, legal, HR or business experience.

For more information on the vacancies, please contact Margaret Conner on T: 01733 555998 or E: margaret.conner@shinecharity.org.uk ‘I strongly believe in the work that Shine does in helping to enrich people’s lives. The opportunity to contribute to the outstanding work that takes place by a large number of individuals is very rewarding.’ Michael Brown, Shine Board Member.

BAFTA nomination for Ruth

Congratulations to Shine member, Ruth Madeley, for her nomination for a BAFTA for her performance as new parent Anna, in ‘Don’t Take My Baby’ (BBC3, July 2015).

Celebrating the news, Ruth said: ‘Playing Anna was a privilege. I hope this film helps to break down some of the prejudices society has about disabled couples with children. My dream to be nominated for an award alongside inspiring actresses like Sheridan Smith, Suranne Jones and Claire Foy has become a reality. I am truly grateful and flattered!’

Let us take the strain out of claiming

Claiming benefits such as Employment Support Allowance, Disability Living Allowance for children, or moving from DLA to Personal Independence Payments can feel challenging. A Support and Development Worker can advise and guide on form filling, preparation for assessment, and information for reconsideration and appeals.

E: firstcontact@shinecharity.org.uk or T: 01733 555988 to be linked up.

You can also find helpful information at W: www.shinecharity.org.uk/welfarebenefits

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Ruth and her dad celebrate. Photo: courtesy The Bolton News.

Our Golden Year!

As we celebrate our Golden Anniversary, it’s a time to commemorate, celebrate and commit ourselves again. Kate Steele, Shine CEO, shares why…

Together – here for you Here to help...

Please do send any comments or enquiries to us: P: Together Shine, 42 Park Road, Peterborough PE1 2UQ T: 01733 555988

E: together@shinecharity.org.uk F: Facebook.com/ ShineUKCharity

W: www.shinecharity.org.uk Registered Charity No 249338

Company Number: 877990

Please let us know if any of your contact details have changed.

Let us know if you would like a large print (text only) version of Together.

© Shine. No content can be re-published without the prior consent of Shine, but Together is here to be shared far and wide, so do shout away and share articles online!

The year 2016 is a very special one for us. The charity, founded as ASBAH in 1966, has developed over fifty golden years into the Shine we know today.

What began as a support group to help a few families with spina bifida and hydrocephalus now has more than 11,000 members, a skilled team and programme of specialist support, and a national office in Peterborough.

This is a year to celebrate – the dedication and determination of individuals of all ages, including the first generations to live with spina bifida and hydrocephalus into their 50s and beyond.

You have experienced challenges and changes in attitudes, technologies and support and shone through it all. You have made your lives matter and your voices heard. We commend you.

It is a year to commemorate – the many lives that have been lost over the years, to complex conditions that have, sadly, been little understood and often misunderstood. We remember you.

A special thanks to BGL, a Peterborough-based national company, who are generously sponsoring our Golden Anniversary Year.

And it is a year to commit, with every part of our energy and conviction, to ensure that the words ‘spina bifida’ and ‘hydrocephalus’ come to stand for the same equality of opportunity and enjoyment in life as anyone else. We are here for you, and will continue that support for you, long into the future.’

DISCLAIMER: Every effort has been made to ensure that the information in this magazine is accurate at the time of publishing. The information provided does not constitute legal or professional advice, and opinions expressed are not necessarily those of the publisher.

Scan away!

We now have our own QR code, which takes you straight to the Shine website when scanned. Go on, give it a go!

Cover photo: HRH The Duchess of Gloucester meets Jason Merrill and Marcia Collins at Shine’s Golden Anniversary launch service, Peterborough Cathedral, 13th April 2016 Golden Service photos

by Shaun Pitchers.

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Overview

A Golden Service

Shine’s Royal Patron, HRH The Duchess of Gloucester, GCVO, joined Shine members, staff and supporters at Peterborough Cathedral to celebrate the launch of Shine’s Golden Anniversary Year.

The Duchess, who has been our Royal Patron since 1973, met some of our members who had travelled far and wide from all parts of England, Wales and Northern Ireland.

Shine Chairman, Richard Astle attended the service and has taken up the challenge of walking 50 miles and an overseas trek to raise funds for Shine in it’s 50th Year. Richard added: ‘So much has been achieved by the charity during the last 50 years. The services and support is vital so if you are able to help us during 2016 to make sure this is a memorable year then we will very much appreciate your support.’

To support Shine please visit W: www.shinecharity.org.uk or F: www.facebook.com/ ShineUKCharity

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Brigitte Jones, Shine member of staff, hosting Rex Moore, Sarah Florey and Tracey Shadwell.

Tracey and Angel

Among those to the meet the royal guest was five year old Angel, who presented the Duchess with a bouquet of yellow gerbers, looked on by Mum, Tracey.

Tracey and Angel live in Hucknall, Nottingham. Angel is five, has spina bifida and hydrocephalus. Angel and her family receives support from Shine. She has had five vp shunts altogether - the last one placed last year. She is a full time chair user and cannot walk but it doesn’t stop her leading a full and exciting life! She likes to go to the park, bowling, swimming, and roller skating – a speed skater whizzes her around the ring in her wheelchair and she loves it!

Angel goes to mainstream school, loves being with her friends and is doing well. Angel loves football and is going to train with the local team in Hucknall. She is not strong enough to play in a match yet but she can join in the training sessions.

Proud Mum Tracey summed up their day. “We are planning our first trip to Disneyland Paris this year and we are very excited.

Angel was very excited about dressing up and presenting the flowers to the Duchess too!”

Angel and proud mum meet the Duchess.

Reflections…

Amar Dugal and Darren Fower.

Photos: Shaun Pitchers

Ella and Nina Rose.

Eric and Hazel Prentice, with Joan Pheasant.

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Overview

Shine from within

Shine members share their experiences of life with spina bifida and hydrocephalus and the impact Shine has had on their lives.

Also at the Golden Anniversary service, Shine member, Carole Armour, shared her thoughts on the social impact that spina bifida can have:

Carole

‘I didn’t have a social network.

My friends were at school. When I went home for the holidays or weekends I knew nobody… It’s isolation. You are segregated because of circumstances.

When I was at work we didn’t mix socially afterwards. I was 17 and the staff were at least 30 years older than me. During that time I also went swimming.

I was taken and returned home – we didn’t mix socially

Jason Merrill gave the Bible reading (1 Corinthians 12:1227, NIV) at Shine’s Golden Anniversary Service.

Jason, a Parish Councillor, has known Shine since he was a child, as his parents went to a local (then ASBAH) support group.

Jason

‘In those days, everyone went to Special Educational Needs school. It’s more integrated now. There was a cluster of us the same age – we were good friends in our teens and twenties – so there was an active movement for change, and today there is a big over 40s movement in Shine.’

Has anything changed over 50 years?

‘I think society is more disability friendly, but getting around is still hard to do, especially if you live in a village with

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afterwards. I went horseriding for about 11 years – we didn’t mix socially afterwards. I did archery at a regular club. Again, we didn’t mix socially. I joined Adult Education classes. We didn’t mix socially.

It’s all isolation.’

‘Shine’s tailored events, peer groups and Facebook groups aim to ensure that people with spina bifida and hydrocephalus feel connected and well supported. It’s not just about being in the same room or group, but knowing there are people out there who understand.’

(Shine Staff Member)

limited buses! Thanks to the Paralympics and more disabled actors, the younger generation is more aware. The media and radio could do more though…

‘I describe having spina bifida and hydrocephalus as ‘a bad back and water on the brain’.

Concentration can be a challenge. I have good and bad days. I have to pace myself. If I have a busy week,

by Wednesday I want Friday to hurry up and come. Rest is good.’

Jason formerly worked for ASBAH and has been involved in disability matters for more than 20 years. He was a founder member of the Shine Adult Members’ Council (formerly ‘Your Voice’).

‘I want Shine to be ever more representative, so involving more people with spina bifida and hydrocephalus on Shine’s groups is very important indeed.’

“

I see the care, the devotion, the fundraising, the fight for equality, the support and guidance and I am so proud to say that I am just one member of many, many people who also love our charity.

Marcia Ali Mahraj shared in Shine’s Golden Anniversary Service by giving a beautiful performance of Schubert’s ‘Ave Maria’. Here she shares some ‘birthday’ thoughts...

‘This year sees the 50th anniversary of Shine, formerly known as ASBAH. As a 45 year old woman with spina bifida I have accompanied the organisation for a large part of that journey.

Ali

‘The world of spina bifida and hydrocephalus have seen some massive changes in this time – massive improvements in treatments and in the life expectancy of those of us who previously would not have survived past childhood. The organisation has had to adapt alongside.

‘My primary recollection in my childhood was of an organisation that supported my parents to access

Marcia Collins has known Shine since childhood. She has been both a Shine Adviser and a Shine volunteer, helping to support families, individuals, and educating the wider public. During the Golden Anniversary service, Marcia shared what being part of Shine means to her...

Marcia

‘I love our charity. I love its history, its foundation, of why and how it started, how it has evolved, changed. I love how many families it has supported, how many individuals it has helped, how many people it has educated and informed. Trying to engage at a local and national level on issues that are important to us...

‘I love how hard the staff and volunteers work, I see the dedication and care they have for the things they do and I give thanks a million times over for their dedication. I love to see families (who may never have heard of spina bifida and hydrocephalus and may be scared of the future for their child) grow in strength as they

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the best possible care and advice.

In doing so a new generation of fiercely independent and empowered children grew up. And so Shine today promotes support for parents and information networking and equality for those with the conditions.

‘Advancing age and wear and tear has brought new health issues to face. Thankfully, I am not facing these challenges alone. I have made some wonderful friends through the Shine40Plus group and we are also informing and teaching professionals about living into adulthood and old age with the conditions. I can’t overestimate how important that is.

Shine has recognised the changing needs and provides specialist support to GPs and community teams nationwide. Happy Birthday Shine and keep up the good work!’

are guided through often the forest of professionals, terminology, benefits, health issues, education and everything that comes from being disabled.

‘I love to see young people attend independence courses, activity weekends and see their self esteem grow, their confidence develop. I most love how they are able to identify with other young people who may have the same issues they do. I love to see adults supported by our Advisers, to have a voice in how our charity runs, to be part of the online community. It’s amazing how the Internet has opened up yet another avenue to support its adult members.

‘As we age, Shine has recognised that we may have needs relating to living with spina bifida in our 40s, 50s, 60s and 70s and responded to it. I love our charity. I see the care, the devotion, the fundraising, the fight for equality, the support and guidance it gives and I am so proud to say that I am just one member of many, many people who also love our charity.’

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News

Shine – My Lifeline

Normal Pressure Hydrocephalus can present a triad of things affecting gait, incontinence and dementia.

It usually affects people over 60. When Sue Skinner was diagnosed with NPH in her late 20s she felt her life had ended – until she discovered Shine.

Now 50, Sue shared her story at the Shine Golden Anniversary Service: Sitting in a consultant’s office after being told that I had Normal Pressure Hydrocephalus was terrifying.

making me disorientated. I struggle cognitively, and it also impacts my walking. This meant I couldn’t teach.

It was a condition which my Doctor, my family and I, had never heard of.

Having three children and not knowing what the future held, I felt alone and out of control. I just had so many emotions and unanswered questions, which nobody could seem to answer for me.

What I needed was support and a new direction, and I found this through Shine. With their help, I now face the future feeling more positive.

I volunteer for them and am also a member of the Adult Members Council, an achievement I am extremely proud of.

Being diagnosed midway through my life, I found it hard to re-adjust.

I had been a schoolteacher, a job I worked hard at and loved. But I had to give this up after losing my job.

The condition affects my memory,

My life has purpose again now, and, in a way, I almost think Normal Pressure Hydrocephalus was given to me so that I can help others, something which I thoroughly enjoy.

Northern Ireland hosts first Prenatal Surgery Conference

For professionals only There have been amazing advances in prenatal surgery over the decade.

This has brought new challenges, risks and raised expectations for spina bifida. A study day on Prenatal Surgery for Spina Bifida will take place on Tuesday 7th June at Queen’s University, Belfast. The first event of its kind, the day has been organised

by Shine’s Northern Ireland Director, Cathy McKillop, with Drs Stephen Ong and Jackie Cartmill. It will bring together eminent specialists from across Europe, including obstetricians, paediatricians, neurosurgeons, allied professionals and Shine’s own specialist team. Delegates will compare the benefits and risks of open pre-natal surgery, fetoscopic and standard postnatal surgery for mother and baby, ethical aspects and implications for future research.

Sponsored by MDI Medical, The Perinatal Trust Fund (NI), Public Health Agency and Shine. For further information contact E: cathy. mckillop@shinecharity.org.uk

Big Lottery Wales supports Shine Cymru

Sue Skinner sharing her experience.

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Shine Cymru is delighted to have been awarded funding for a 3-year project from Big Lottery Wales to develop even more services for our members of all ages, in all parts of Wales! Contact E: sian.prince@shinecharty.org.uk for more information.

Pilot project will make the world of difference

Find us… on social media Share your photos, stories, news and keep up with Shine’s news too!

Thanks to funding from the Welsh Government, Shine Cymru will pilot a 3-year project on ‘early intervention’ – which will enable us to employ a full-time member of staff to work specifically with parents who have received an antenatal diagnosis of spina bifida, and families of babies and children with the conditions up to the age of 10 years old. This work will be of huge significance in educating our younger members, families and professionals of the importance of understanding, and learning to manage, the conditions from a young age. Once the pilot is underway, we will be seeking funding to deliver similar projects in England and Northern Ireland.

Tips for getting out and about this summer

At this time of year, Shine members often ask us for advice and information on planning holidays and days out.

If you’re going on holiday, Shine has produced a handy guide.

See W: www.shinecharity.org.uk/services/travel-advice or email E: firstcontact@shinecharity.org.uk or phone 01733 555988 to order a copy.

Fancy a Cruise?

If you would love to go on a cruise, but think that having a disability might be a barrier, wheelchair user, Doug Smith, who has spina bifida and hydrocephalus, has written a book on how to go about it. Read more at W: www.simplyholidaydeals. co.uk/travel-blog/the-disability-to-cruise Travel without limits – W: www.disabledholidays.com – is another handy source of ideas and information about going on holiday.

Planning a trip to the seaside?

Thanks to Beach Easy Wheelchairs who have teamed up with respective councils in Pembrokeshire, Cornwall and Brighton & Hove, if you are a wheelchair user you can access more wonderful beaches by booking an all terrain wheelchair. Find more information at W: www.beachwheelchairs.co.uk/beach-wheelchairhire.php

Love the Outdoors?

www.mountaintrike.com are creating a network of Experience Centres around the UK where you can try and hire their all-terrain Mountain Trike wheelchairs. The latest venture is with Outdoor Academy, based in Reading.

Go to W: www.outdooracademy.co.uk/mountain-trike or T: 0118 9833943 or E: info@outdooracademy.co.uk to find out more.

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Health

Health Hub boost thanks to Peterborough Lions

Shine’s services aim to ensure ease of access, independence and good support through times of change for anyone with hydrocephalus or spina bifida.

L-R: Gill Yaz, Kate Steele, Robin Barnatt, and Collette Torrance from Shine show Bill Peacock (President) John Cheetham (Vice-President) David Pope (Secretary and Treasurer) of Peterborough Lions how the new scanner will work.

The new Shine Health Hub, based at the Peterborough office, provides a free, one-stop health check and advisory service for people with spina bifida and hydrocephalus.

Shine now has a new bladder scanner which will enable Shine’s specialist team to spot urinary problems which are a common cause of incontinence, infections and kidney damage.

The monthly clinics enable adult members to meet Shine’s health team – including specialists in mental health, continence management and occupational therapy.

Gill Yaz, Shine’s Health Development Manager, said:

Thanks to a generous donation of £4,500 from Peterborough Lions,

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‘People don’t realise just how serious bladder problems can be for someone with spina bifida.

Thanks to this very generous donation from the Peterborough Lions Club, the new bladder

scanner will help Shine’s specialist team to help our members manage their condition and prevent further problems from arising.’

Bill Peacock, President of the Peterborough Lions Club, commented: ‘I have never been touched so emotionally as I was on seeing the work of Shine.’

Contact E: robin.barnatt@shinecharity.org.uk or T: 01733 421355 to find out more or book an appointment.

Val’s Hub Story

Valerie Allen meets Gill Yaz, Shine’s Health Development Manager, for her Health Hub check up.

Valerie Allen was told that she was only supposed to live for three months. Now 66, Val’s full life has included studying at college, working full time for Nottingham County Council, being a paralympic athlete and winning a world championship silver medal for bowling (women’s pairs).

Val, who has spina bifida, recently came to the Shine Health Hub clinic for a full check-up, accompanied by her friend and neighbour, Ann. There she had a range of checks with Shine’s specialist clinic team, including blood pressure, weight, lifestyle and mental health.

Beaming broadly afterwards, Val shared her experience: ‘Coming here gives me confidence – it’s like having an MOT – you can have all your checks in one go.

You are treated as a whole person, rather than in ‘bits’. Here they get to know all about me.’

Val drives her own vehicle from her wheelchair, which won’t fit in Ann’s car.

‘A bonus is the parking. There is car parking nearby [behind Beales] with

plenty of space, so it’s easy to get the wheelchair out.

‘Some of us are getting older.

We need to think about the future.

There are things I need to do – I know I need to lose weight and strengthen my arms. Here you can get weighed. There is also a kitchen where you can try different equipment and practical tips, such as buying a new kettle so it doesn’t strain my shoulder.

‘If I had an accident, a spinal injury, I’d be sent to a special centre, but because I was born with spina bifida, there was no special centre.

When I was signed off by my consultant that was it – we just had to get on with it!

‘Expectations about disability were different back then; I think attitudes are changing. But there is a lack of information, knowing where to go for help. It helps to go through everything together here. Knowing you are not alone. Knowing where to get information. Knowing there is someone there.

‘Even though things are tough you can cope. I can go home happy; I’m alright.’

Shine event – Independent Futures 5th-6th November 2016, Peterborough

Independent Futures is a two-day residential event, skilfully designed for a small group of Shine adult members to discover ways to be more independent and feel more confident about trying new things. The event provides a social opportunity to meet new people in a relaxed environment.

For more details about the programme and how to book, contact Maureen Jobson on T: 01733 555988 or email E: firstcontact@shinecharity.co.uk

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Celebrate with Shine

Golden Events Here are just some of the Golden events that are coming up this year!

The

is here

A quiz is a great way to combine fun and fundraising – and show how bright you are! We’ve made it easy for you to host your own quiz for Shine with the Shine Bright Quiz pack. We’ve even included a Shine round! You can download the quiz questions, answers (keep them secret!) and scoresheets at W: www.shinecharity.org.uk/quiz and for any additional help or advice we are here to help at E: fundraising@shinecharity.org.uk

Join us in 2016 for Wear Yellow and Shine!

Go loud, feel proud and wear yellow – and help Shine celebrate its 50th year!

We’d love it if you’d join us to make Shine’s Golden Anniversary year extra special with some fun and fundraising to support everyone with spina bifida and hydrocephalus. Hold a wear yellow event at your school, college, workplace, care home, nursery – it works anywhere! You can wear yellow, bake yellow, ride yellow, tattoo yellow, whatever works for you. Maybe add a touch of gold too?

And don’t forget to share your photos on Facebook! To find out more go to W: www.shinecharity.org.uk/WYAS or contact E: fundraising@shinecharity.org.uk Please join us for the

Shine Members’, Family and Friends

Birthday Bash g i B Balloon Races!

30th June 2016, at noon Three interactive balloon races: Belfast � Cardiff � Peterborough An exclusive Shine 50th Birthday event just for you, your family and friends!

Great prizes to be won, including champagne!

For more information go to www.shinevirtualballoonrace.com

‘Our Heritage’ Exhibition launches in July

Discover the pioneers and people of a hidden history…

Spina bifida and hydrocephalus have been around for thousands of years and have an amazing but often ‘hidden’ history. A new exhibition: Spina bifida and Hydrocephalus: Our Heritage will bring this to life through the eyes of its people. Whether a pioneer of medicine, a famous author, a grieving father, or one of the thousands of people who have the conditions, they all have stories to tell. The exhibition will launch in July, with an open week at Shine’s national office in Peterborough. Look out for details on our Facebook and website and if you would like to come, please contact E: val.stokes@shinecharity.org.uk or T: 01733 421356. (The exhibition will be closed for special events, so please check before you travel.)

June 7th – a study day on Prenatal Surgery for Spina Bifida will take place at Queen’s University, Belfast – the first event of its kind! (See page 8) June 16th – a beautiful flower bed design of Shine’s 50th logo will be on display at Erewash, Derbyshire, with thanks to Erewash Borough Council and the inspiration of Shine member Jackie Moore and husband Clive.

August and September – Shine’s Golden Treasure Hunts will be taking place around the country. Anyone can take part – Shine members, community groups, schools, businesses. Contact E: shelley.green@shinecharity.org.uk to get involved in a fun detective trail!

October 7th – Shine’s Family Opportunities Weekend, Holiday Inn, Coventry, is designed for families with a child 0-5 years old, who has spina bifida and/or hydrocephalus.

The weekend provides learning and social opportunities for the whole family, including siblings, in a safe, friendly environment. £190 per family. Contact Denise Richardson on T: 01132 556767 or E: office@shinecharity.org.uk for more information.

October 8th - Shine Sponsored Firewalk, Thorney – impress your family and friends for a great cause! (Training is given before you tackle the 12 foot fire pit!) Cost: £30. Contact Cheyenne on T: 01733 421307 if you would like to take part.

October 24th-30th – Spina Bifida and Hydrocephalus Awareness Week – events will include lighting up venues around the country on World Spina Bifida and Hydrocephalus Day (25th October) to raise awareness – we will post details nearer the time on W: www.shinecharity.org.uk or F: www.facebook.com/ShineUKCharity November 5th-6th – Independent Futures 2016, Peterborough (see page 11). For further information contact your Shine Support and Development Worker, or contact E: maureen.jobson@shinecharity.org.uk or on T: 01733 555988.

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